in brief

It’s been on my to-do list to write an update for two weeks now, and for two weeks I have procrastinated until I have The Time, but I never do have The Time, so here I am without The Time getting something briefly down. This is supposedly better than nothing. The jury remains divided.

The above triptych represents my progress in pictorial form: I’ve been trying to make embroidered photos as practice for my final exhibition but it turns out that while I am good at embroidery, middling-to-fair at photography, I am crappola big-time-rubbishly-awful at embroidered photos. They’ve all been bad. It’s confusing, frustrating. So one day I threw paint on a photo instead, to kind of show the excruciation of a cluster headache, and I knew it was confronting but I put it on Instagram anyway and someone said it would be triggering for domestic violence victims and I thought a) likely true, and b) why do I so often feel like I’m being asked to tone it down, shut it up, go back under my rock? It felt a little like my own experience was being judged as less worthy of a voice. Cluster headaches are shockingly violent, and I sit alone in the middle of the night in the corner of my bedroom in absolute agony until they pass and I do think that this painted photo bears witness to the experience. I also think that my commenter is not wrong about it looking like I’ve been beaten up, and I don’t want to traumatise a group of people who deserve only kindness and support, so back to the drawing board for me. I don’t suppose it’s that good anyway. So, yay me, lots of effort and very little progress.

Photo number 2 taken just this week, because shit I am still so tired and feel like a bloody athletic champion if I get dinner on and the washing done, let alone actual academic words down on an actual academic paper. The irony isn’t lost that said paper is about fatigue. It’s hard to pull complex and disparate ideas into some kind of publishable whole, but we plod on, we always plod on. I am becoming very interested in the taboo of the body’s insides, it’s aversive monstrousness, and, not unrelatedly, the sugarcoating of medical illustration. Sugarcoating isn’t the right word, but I can’t find that right word just now, so it will have to do. Also, and also not unrelatedly, how feminist discourse on the strength of a woman’s body reinforces the whole dichotomous idea of toughness = good, weakness = bad. That photo of me? I know I look like shit. I know I look unhealthy and fatigued and the opposite of whatever a kickass strong and self-sufficient woman is supposed to look like. But I find something quite tender, and almost beautiful, in that photo. Perhaps it’s that I’m wearing my mortality on my face so clearly, revealing the secret weakness of all our vulnerable biological selves so obviously, and perhaps that reminds me that I’m very much still actually alive. We think of bodies who show their inside illness on their outside as somehow closer to death than other bodies I think. But they’re not. We’re all just one heartbeat away from the void, and lord but do we as a culture recoil from that knowledge. I don’t enjoy the experience of such constant fatigue; like it says on the label, it’s exhausting. But I do believe that my body is as equally and vitally alive as any other body, that aliveness is not a scale, nor vigor a virtue.

So yeah. That’s what I’ve been up to. Also I’m still drawing faces, which is apropos of nothing, I just wanted you to know.

finis coronat opus*

I met with Veronica a few weeks ago to go over some marking requirements for one of her taught classes, and for a general catch-up. I told her how I’d had a bit of a breakdown, though it was actually a lot of a breakdown, and a rather prolonged and unproductive one too. Constant pain and lack of sleep was a big factor, but also, and not unrelatedly, despair (probably a little disgust) at how little I had accomplished, how few connections I have made, opportunities created. A funded Ph.D was a gift and one I have so far made poor use of. Just getting out of bed has been struggle enough.

It is what it is, I can’t go back, and I’ve learned some useful lessons. It’s a bit of a sprint to the finish now, but I have a lovely chart stuck in my diary of what I have to finish by when, a stack load of notes and books and articles for the next two papers, and a new keyboard to plug in to my very old and rather ailing laptop (I spilled tea on it recently. This wasn’t helpful). Now all I need are a good pair of running shoes and we’re away…

I’ll be checking in here every Monday to update progress and keep the momentum going. We’ll get there, and that’s what will matter most: to quote some anonymous Latin dude, *it’s the end that crowns the work.

chimamanda is one of my favourite authors

“I don’t start out writing to challenge stereotypes. I think that can be as dangerous as starting out to “prove” stereotypes. And I say “dangerous” because fiction that starts off that way often ends up being contrived, burdened by its mission. I do think that simply writing in an emotionally truthful way automatically challenges the single story because it humanizes and complicates. And my constant reminder to myself is to be truthful.”  

 –Chimamanda Ngozi Adichie, from an interview with Parul Sehgal at Tin House

Just book-marking a quotation to remember for part of my methodology paper. It stands just as true for autoethnography as for fiction.

painting with fingers

So apparently I only post once a month now? Which is a lot more frequently than I seem to paint these days, tiny gouache faces aside, but, you know, when the going gets tough, the Megan gets painting. The frame is just a mock-up, and the pictures need varnishing to bring out the colour fully (also the light was bad when I took the half-arsed iPhone photo), but I think these expressionist florals might be my favourite of all the work I’ve done. I’m not sure why, perhaps I just find them comforting. I appreciate comforting.

I switch from loving to hating this one, often both at the same time, it’s maybe a little too pretty? Also it has an even number of flowers, and that’s just annoying. I like the use of colour and the sense of movement though, so it gets to stay. At least for now.

I paint these with my fingers instead of brushes. I have been reading a lot on embodiment, how much social and cultural knowledge we carry in our moving bodies, how life itself is movement. My own embodied days are not getting easier, the deep bone level fatigue has not lifted (is feeling burnout of your own body a thing?), and getting words on paper, analytic words on academic papers, is hard and long and slow, and so for a little while every day I put it all down, pick up a tube of paint, and let my hands take over from my words. I don’t plan, or use references, I just trust they know what they’re doing and let them do it. It’s very mucky and deeply soothing, and right at this particular point in my life? I very much appreciate soothing.

wallflower

It all started with a haircut, a terrible haircut, a no good awful very bad haircut. I had been going to the salon for years, but after my regular stylist left I was bounced from one available hairdresser to the other, fitted into odd time slots on inconvenient days, a source of income, Jane Doe with a purse. The omens were there.

My new-to-me-again stylist on this particular evening (mornings would be best? sorry but we only have evenings…) was very young and very self-assured and exceptionally condescending. I told her what I wanted, she made affirmative type noises, then proceeded to chop my boring-but-inoffensive hair into a helmet of humiliation. Bits were long where they should have been short, short where they’d look better long, thick in places that should have been thin, uneven, unflattering, unappealing, just entirely un. And when she held up a mirror and told me she thought we’d ‘cracked it’? I smiled and said thank you.

I smiled. And said thank you.

The hell?

If you look under assertiveness in a dictionary, you would never see my picture there, but the constant illness-pain-fatigue roundabout I’ve been riding the the last few years has taken an overly acquiescent sort of a personality and squished her even further into a spineless jelly-boned schmuckerly schmuck. I’m well aware of it. I’m not proud of it. I’ve just been too tired, too defeated, to do anything useful about it. Bless, but I kept trying in my own passive way – bright lipstick, talismanic rings, gouache faces as friends to motivate, to give courage. These all worked about as well as you’d expect them too, which is not at all.

I came home that evening too worn out to even feel defeated. It’s just bloody hair, and she was just a silly girl. I got my blunt kitchen scissors out and hacked off the worst offending pieces, fired the salon, and came to the realisation that I’ve been mistaking lack of energy for lack of ability, and that so many things are just bloody hair. We stuff up. We fix what we can. We move on.

I’ve hated the work I’ve been doing this year; it’s confused and boring and not really even about the important bits of me at all. I read a story the other day about a writer who told an older colleague that he was going to stop all the sci fi nonsense and concentrate on creating ‘literature’, and the colleague just replied, okay, but just don’t lose the magic. I love that. Also it made me sad. In mistaking lack of energy for lack of ability, I’ve let my work become a cardboard caricature of what I think a PhD should look like and I not only lost the magic, I never put much value in that magic in the first place. Would have withered in embarrassment to even call it magic.

I asked Kerry and Veronica if I could change my approach for this final well-behind-in-everything-before-I-even-begin PhD year, but it’s not really so important to me if I do or if I don’t. I’ll get the job done either way. What is important to me is that I had the courage to ask for the change (that shit’s hard for me, people) and whether we agree on a radical shift or a minor alteration, I’ll fix what I can. I’ll move on.

I’ll remember the magic.

april

The body is not for the faint of heart. It is a luxury to not need to consider your body, to not be aware of it at every turn. To wake up in the morning confident that your body and mind will be roughly the same as yesterday, won’t torture you or make the world unrecognizable.

Karen Havelin, Who Do We Become When We Survive Our Pain?

April was a shit. Torn tendons, nightly cluster headaches, a swollen arthritic knee, and a stupid bloody virus that, for reasons I absolutely do not understand, turned my liver into a giant raging inflammation inferno which felt exactly like living through a massive weeks-long hangover. I still can’t eat anything substantial without wanting to throw up, which has meant surviving on sparkling water and candy. Healthy. Highly restorative. Well, at least I can move around again. This is significant progress.

I’m so bored of this unreliable immune system, bored of myself. Bored of having to think about it so much, bored of having to think of it at all (and if I didn’t have to think about it, would it bother me nearly so much?). Bored of saying I’m bored. The closer I look at anything related to me – my health, my art, my writing, my craft – the more insubstantial and irrelevant they seem; clear puffs of cloud in the distance, vague wisps of nothingness up close. I tried to write posts of things I have made, as I promised I would, but they too just seemed to crumble away into the ether.

I haven’t taken any photos. I haven’t painted anything. Made no further progress on my PhD. April, in so many different ways, has definitely been an absolute shit.

Somewhere in the midst of that month I started reading again, though. I don’t know why; desperation and loneliness I guess. I’ve always been an avid reader, and by avid I mean voracious, insatiable, passionate and zealous, but I stopped when the first brachial neuritis hit. I just couldn’t concentrate for long enough. Concentration is a problem still, but I missed all those interesting people with all those interesting things to say. I missed them, and I recognise that I’ve become a blobby apathetic amoeba-brain without them.

That was some good alliterative skills right there.

One of the books I read was a thin popular tome from The School of Life (with whom I have a strict like/meh relationship – the centrality of privilege in their ideas and advice seems to go largely unacknowledged). It’s called ‘What’s Culture For?’, and in it I found this gem…

We’re leaky creatures. Hope drains away, not because the situation is genuinely hopeless but because we are so attuned to seeing what’s wrong. It’s precisely because we so readily lose hope that the optimistic reminders provided by culture – hope in amber – are so important to us.

In this context, ‘culture’ means books and paintings and poetry and music and dance and … well, all ‘art’ in general, I suppose. ‘Hope in amber’ is as good a justification for both the production and consumption of any of the arts, in whatever form, as any I have ever come across, and a timely nudge for me to escape the mire of my own sludgy imagination into someone else’s (edited, curated, collaboratively polished) one. Because I am, most definitely, a leaky creature, and if I have the chance to borrow some optimism, then why the hell not?

I’m looking forward to May. It was named after a goddess of fertility, and though that’s a northern-centric characterisaton of this time of year, I’ll take it as a productive omen anyway.

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.