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.

starting to figure it out a little, part 4

My Tuesday evening was spent driving through city rush hour traffic to visit a neurologist, Dr. C with the kind blue eyes and the kind soft voice. I felt ridiculous in my red lipstick, and my smelly feet, and my fat tired body. After half an hour of finger-to-nose touching and one-leg standing type of neurological exercises, his official diagnosis was ‘definitely something under the general migraine-cluster headache umbrella’, to be treated with the same medication as the GP prescribed me many weeks ago.

Good-o.

I feel an odd kind of jealousy of people who have just one condition to focus on. I have a twisted longing to take all the many small and complicated health-related balls I try to juggle and swap them for just a single ball, even if it was a very large and very heavy ball. In my imagination, this is a relief. In my imagination I could put it down, declare it too burdensome for one person to carry, get help, get sympathy (the deserved, non-humiliating kind). I could have t-shirts made and charities started.

it’s complicated. and i forgot the hives.

I don’t feel a lack of legitimacy, just an abundance of complication. I want something to blame, and I want that something to not be me. I want certainty. I want to know when I find a medication that stops the bomb in my head exploding at 3 in the morning, I won’t be woken the next morning with a painful shoulder that no longer fits right, that when there’s relief for the painful shoulder that no longer fits right, I want to know I won’t walk through the next day with another tear in another weak ligament, and when another tear in another ligament starts to heal, I want to know the extra bone in my hand won’t hurt as much today, and if the extra bone in my hand doesn’t hurt as much today, I want to know that I won’t feel exhausted because now more of my thyroid has  stopped producing its hormone, and when that lack of hormone has been compensated for, I want to know I still won’t feel exhausted because the bugs in my lung have started growing again, and when the bugs in my lung have been killed off one more time, I want to know that I won’t spend a week itching my hive covered skin, and when the hive covered skin settles down once more, I want to know that the stress of a long string of sleepless nights won’t leave me vulnerable to another viral attack, and when I finally recover from another viral attack, I want to know my joints won’t begin aching from a flare of inflammation, and when something calms the flare of inflammation, I want to know that this is a day the brachial nerves won’t dance their pinching burning impish dance, and if this is a day (blessed miracle!) the brachial nerves don’t dance their pinching burning impish dance, I want to know the pollen (the perfume, the dust, the cat fur) won’t swell my face right up in a weeping throbbing ball, and if the pollen (the perfume, the dust, the cat fur) don’t swell my face right up in a weeping throbbing ball, I want to know that today an irrational wad of overwhelming anxiety doesn’t keep me afraid and silent, and if this is a day an irrational wad of overwhelming anxiety doesn’t keep me afraid and silent, I want to know the pills I take won’t numb my brain, turn my stomach, put me to sleep for days at a time, and if the pills I take don’t numb my brain, turn my stomach, put me to sleep for days at a time, I want to be sure the bomb in my head won’t explode at 3 in the morning…

Loud, clanging, complicated body. It never shuts the hell up, just shifts its mood between plaintive mewling to full screaming hissy fit. One illness would give me the ability to point at something and say ‘this is what and why and how’, but this messy, bitsy, ill-fitting group of sodding piss-all, they are just too messy and too bitsy to point at and make much sense.

What I think I want, even more than cure, or rest, or help, or bloody peace and goddamned quiet, is to just simply make a great deal lot more sense.

 

not sure, blah blah, part 3

We won’t ‘know each other’ though, of course. I get carried away by the poetics of a lovely idea sometimes. We can know each other better however, and that’s no small thing.

I worry, though, that when we deal in small pieces, as researchers, as voters, as parents, as doctors, as everybody who ever exists, that we’ll put those pieces together all wrong.

And when I say I worry, I mean that I’m pretty sure this is exactly how it actually works.

still not sure where i’m going with this, part 2

Imperfection has a certain tang. Honestly, most of the first year of my PhD has been spent in a spinning fog of confused brain fade for one reason or another. I never felt okay enough to fully admit how not okay I was. I didn’t want all the things I had worked so hard for taken away from me just because my goddamned nervous system had set itself on fire.

I still don’t. This can make being truthful difficult, even (sometimes especially) to myself.  It feels like there is an imaginary line between  acceptable and unacceptable pain and illness, acceptable and unacceptable time spans in which to suffer from pain and illness. I tried to present myself on the right side of that line, without ever stopping to consider that the line, the idea of the line, is itself completely fucked.

I’ve started wearing red lipstick. Bright vintage brick red. I rarely wear lipstick at all and when I do it’s in colours that are called things like ‘nude’ or ‘barely there’ (which always, incidentally, only literally means nude or barely there if you have white skin). It’s not a cover up, I’m not trying to ‘pass’ for healthy, putting my armour on, or any other similar kind of defensive act. I don’t even think it looks that great. It’s okay, but. Meh. A little showy for me.

And the showy is the precise reason I’ve started wearing it. Red is such a dominant colour, you can’t miss it (unless you’re colour blind, which my husband most certainly is and has yet to notice any kind of change). Someone who walks into a room with bright red lips is someone you notice, or more importantly, is someone that can’t hide. I need practice at not hiding. The louder my body has become, the more I’ve tried to mute it, which is, of course, just muting myself.  I’ve found it hard to write, to talk, to even leave this small crappy bloody tiny house. I embarrass myself. Hiding has been the best way to keep my body, my shame, quiet.

It’s also been a complete and unmitigated bloody disaster.

Antoine de Saint-Exupery said that we are afraid to let go of our petty reality in order to grasp at a great shadow, and what I think he means is that we (and by we, I almost always mean I) are comfortable in our routines and the stock stories we pull out to explain who we are, and why things are, and what is possible. The great shadow is unknown, unfamiliar, and could equally hold a portal to hell as a stairway to heaven. The shadow feels like an enormous psychological risk.

It’s not though. Not really. There’s neither hell nor heaven there, just better context, a different perspective, more information. It’s taking a walk in other kinds of weather, it’s looking at the world, at our community, at our place in them, from other points of view. Maybe from there we might catch a glimpse of someone else’s imperfection too.

We’re all hiding something. I don’t want all I can confess of what I am to have in it the defeat of isolation, mine or someone else’s; I do want to return to imperfection’s school, to grasp at that great shadow, and in the grasping to learn better how to take up my allotted space, develop my skills, use my voice, contribute my lot. To perform a human act that will make me real again; and then perhaps we’ll come to know each other.

Well, so. That’s quite a lot to expect out of one small tube of red lipstick.

procrartination

A couple of random shots from a photography workshop I attended a couple of weekends ago. We were supposed to be finding and photographing reflections, and also I framed things with trees. I tore a ligament about 2 minutes in but managed to hobble around Auckland for 5 hours anyway, because my daughter was with me and also I’m a bit thick.

Then I took a week off and practiced faces and knit things and tore a different tendon off a muscle (because 5 hours hobbling on a weak leg…).

Now back to work and I have lost absolute confidence in pretty much everything I do, in all the ways, but we just keep putting one (lame) foot in front of the other anyway, eh?

 

almost made it

On the left we have my view for the last 12,812,810,947,857 days; computer screen showing painfully slow PhD writing, piles of notes and books and more notes, and the eternally unfolded washing and unused vacuum cleaner sitting forlornly in the background. I may never housework again. I may decide I am completely against  housework.

I meet with the supervisors tomorrow (hi Kerry! hi Veronica!) and I have had a big and clever plan for weeks to show up with the best article in the history of all articles in my hot little hands, all finished and clever and referenced and finished.

But it’s not finished. It’s hard work, this easy-reading writing. Weaving in all the threads so it looks natural and obvious and so simple that perhaps anyone could have thrown it together over the weekend, it just takes a really long time. I probably edit every sentence a dozen times, then delete half of it and start again. Etc. It’s … it’s like trying to choreograph a 3D jigsaw puzzle on one leg to music that you then also have to compose, while rubbing your stomach with your left hand in time to other music. It’s possible this is a slight exaggeration, but I don’t think so. I have been breaking my own rule of going to bed before midnight and not working on weekends trying to get it done, and last night at 2am, having written just one paragraph in three hours, I had to admit defeat and go to bed.

It’s a bloody brilliant piece of writing. I am so proud of it. I even get to use the word ‘palimpsest’, and name three kinds of demons! But, alas, it’s also not (yet, but really very nearly) finished.

This morning, instead of frantically trying to throw together those last few pages, I took my tired self to the hairdresser instead and told her I wanted a change. I feel changed. Maybe not changed, maybe just more sure-footed. The pain has been (and is) a shit, no doubt, but the confused and confusing mental fog I lost myself under was so much worse. I didn’t know if it would ever lift; I forgot it even could. Now that it has, I’ll be damned if I take my poor wee brain for granted again. I’ll be damned if I wreck it with not enough sleep, and I’ll be damned if I don’t appreciate all the things it can do. It’s unique and it’s mine and I’m so very glad to have it home again.

If that’s not worth new pink hair, I just don’t know what is.

not another post where i moan about how indecisive i am

Because I’m a Master now, and Masters are in control of things. The dictionary says so. I told my children they can all be my servants if they want, but it turns out that they very strongly don’t want.

I was watching my fellow graduates and graduands walk across the stage as I was waiting my turn, and thought how, in a physical sense, we’re all kind of bundled around the mean. Ordinary height, ordinary looks, ordinary weight.

But every now and then there was a particularly tall, or particularly short, or particularly beautiful human walk across the stage, and their very difference changed my ‘gaze’ of observation.  I could see them more easily as individuals, for instance, rather than a blur among the many. And there was an underlying sense of curiosity too – what must it be like to be so tall/short/beautiful? I can remember others with unusual features, such as pink hair, but that was more about the hair than the person behind the hair.

None of these had that sense of discomfort, however, as looking at, or trying not to look at, those with a noticeable disfigurement might have, and it’s that gaze of discomfort that is becoming central to my burgeoning PhD project.  The Gaze, Disfigurement, Portraits. I have books on all three reserved at the library, a new notebook to take notes on the same, and, now I have officially laid the last ceremonial process of my Master’s degree to rest, a renewed sense of commitment to this next academic stage.

So it begins.

miscellanea

yes is a world
& in this world of yes live
(skillfully curled)
all worlds

e.e. cummings

I memorised these lines from e.e. cummings poem many years ago, as a lyrical spell to ward against my rather self-destructive habit of fear-based procrastination. It hasn’t helped much, I’ve been doing it more than ever lately (but I’ll suck! They’ll hate me! And my mother dresses me funny!) so I made a large floral ‘yes’ for the wall above my office desk to boost the effects.

Sometimes my misspent youth as a craft blogger comes in very handy.

It’s not yes to all the things, that would be a life spent as a foolish doormat, no thank you very much. It is a yes to doing the things I value, even if I’ll suck and they’ll hate me and my mother dresses me funny.

It was also, you’ll notice, another pretty way to waste even more time…

---

I had an idea on self-portraits. One of the aspects of the lived experience of facial disfigurement that I am interested in investigating is the ‘outside’ view, that of the person doing the looking as opposed to the person being looked at. I am thinking a series of performance portraits where I am the stand-in for all those looking, and portraying the different personas of the same from the point of view of how the participants feel being looked at. Does that make sense outside my head? I think it could be quite a powerful set of portraits, particularly when seen in contrast to the portraits of those being looked at.

(Not a self-portrait like that one, for what it’s worth.)

---

My friend Janet sent me this badge when the results for my Master’s thesis came though. I picked it up again the day I got word that I had been granted a doctoral scholarship. I’ve never actually worn it, but I do like to stare wistfully.

---

When Kerry and Veronica advised doing my Ph.D. via published articles instead of a thesis proper, I believed them that it was (is) the best way to do it if I want an academic career. I was also a little disappointed. Disappointed because I had always wanted to write a non-academic book as part of the research product, and this seemed to exclude that, or make it more difficult. Perhaps it doesn’t, perhaps I have no idea what I’m talking about, perhaps Elvis still lives. But after the Master’s thesis was rejected for publication I thought that there are still some useful ideas in there that I would like to share, most particularly some ideas around the margins of freedom, or the small freedoms as I have called them. There’s a lot more there than I was able to go into with the Master’s thesis, and as an idea it has never really left me. So, I’m going to write that book anyway (alongside PhD’ing and marking and parenting and arting and photographing and walking giant dog), and I will blog the progress here alongside the PhD progress, because it’s all related. All I’ve ever wanted to do is find out about interesting things and then tell about them.

---

Yes is a world.

hazy

Another day, another dirty mirror, this one in the bathroom that didn’t burn down. It almost burned down, but Warren was in the shower when the faulty light fitting sparked and caught fire, so he had time to yell, and we had time to come running with buckets of water, and the fire didn’t have time to race off into the roof space. So, phew for that. But not phew for the melted plastic burns on Warren’s arm  (he was naked, it could have been a lot worse) and Nathan’s broken toe (ran into a door frame in his hurry), and how I now can’t have my crappy house rebuilt with the insurance money. Warren says that making jokes about insurance money is not very funny, but I say it’s a little bit funny.

(Kerry says that I am rich because I have a big dog, but I also have a crappy house, so the combination means I’m actually middle class).

I am reading the book Precarious Visualities in an attempt to find my way through the hazy, unfocussed fog of thinking I am currently mired inside of. (Did you like the melodrama in that sentence? I thought it particularly well done, though the clanging segue was admittedly appalling). I believe there is something both evocative and challenging that portraiture will bring to my project, but I can’t articulate what that might be except with vague words like, er, identity and, um, some sort of kind of thing maybe around visibility. INSIGHTFUL I KNOW. And I should probably not talk about the book until I’ve read it? But I can offer you this from the introduction (they’re talking about video art, but I think the idea can hold in the more general sense of portraiture as a whole also): … the image becomes a site of representation and interpellation of the self – but a self whose identity is more a question or an open-ended project than a definition or a clear determination.

I’m wondering if the haziness I am feeling is part of the point, if this idea of an image as an open-ended question is the centre to which everything else will need to hold.

portrait of the student as a crumpled old lady

There are approximately 3 things we can learn from this series of self-portraits. 1) I may need a haircut, 2) my nostrils are surprisingly clean, and 3) my mirror is most definitely not. Also, I may need more things to do with my Sunday afternoon.