oh look, flowers

oh look flowers

For a supposed creative sort of person, the photos here are getting decidedly uninteresting. Nevertheless, there are two mildy interesting things to note in this picture: 1) at the end of summer my cut flower options are becoming terribly sparse, and 2) I’m not holding them with my thumb because it still hurts. It still hurts and will keep hurting because I have grown a (benign) bony tumour at the carpal metacarpal joint (“likely secondary osteochondromatosis“), which now has its own blood supply and has gotten big enough to start pressing on everything else, hence the pain. I’m sorry clever wee extra bony thing, but you must die. Is it weird that I kind of feel sorry for it? It’s gone to so much extra trouble to survive and grow, and all it will get for its hard work is a visit to the surgeon and a swift execution. Well, life never was very fair, or so I am often told.

I read an interesting article (interesting if you read between the lines; the authors didn’t seem to quite understand the psychological wealth of the data they were analysing) that found people with chronic pain emphasised the social isolation of their situation, the unpredictability of it, and with that they had developed, in their various ways, a creative flexibility to deal with both the isolation and the unpredictability. In response to their loneliness, many had repositioned their values to make room for the wonder of the ordinary, of bringing joy to others, in place of the social value of paid work. It resonated deeply, and I thought it a quiet profound little gem hiding away in the dusty recesses of published academia, even if those who wrote it didn’t feel the same way (their conclusion was that people with chronic pain should be made aware of how much they value work, which will, in turn, cost the economy much less in doctor’s visits. Yeah.) Human imagination is remarkable, even, I think, kind of miraculous, and I wonder if there is something in the enforced slowing down of living with pain that engenders an enhanced noticing of everyday pleasures.

Like, perhaps, flowers.

It’s not the time pressure of terminal illness, a hurry to sort life out and get things right, but a slower, more gentle, re-evaluation of what one’s worth to society might entail.

Or something. I don’t know. I only know I have to stop typing now, because ouch, okay then, bye.

hmm, interesting…

I’ve been focussing on reading research on the pain experience, and it’s a little terrible how much I enjoy this as a topic. It feels amoral, somehow? But the curiosity muse is a little amoral I suppose, and in any case, better to love it if I’m going to be spending another couple of years with it, than to not.

Some very brief ideas that I have come across:

The moral dimension to chronic pain. I never thought about a certain morality being attached to the experience, but there clearly is (e.g. taking care of one’s body as ‘good’, not looking after oneself as ‘bad’, to horribly oversimplify it). I started noticing it in a lot of the research, a sort of moral judgement of pain experience that had not been critically examined by the writers. For instance, one article noted that health personnel need to be aware that different attititudes towards acceptance of pain would affect ‘therapeutic outcomes’. I.e., those with a ‘negative’ attitude, who didn’t accept the chronicity of their pain, would have worse outcomes than those with a ‘better’ sort of attitude. There is even a sort of morality about pain itself as inherently bad, wrong, to be removed. One quotation, emphasis mine: The goal is, naturally, to find methods to alleviate pain…*

One sociological article examined this idea more critically as a Western cultural ideal that stems directly from early and middle Christian eras where Heaven is defined as a place with no pain, as its distinguishing difference from our troubled lives on earth, and the medical community has adopted this idea of  pain eradication as a goal and moral good.**

Timescapes are almost never taken into account in research, where they could so clearly be helpful in understanding the experience, the data. One instance is the idea that people feel they can’t talk to others about pain, but the thing is the constancy of that? None of us want to listen to someone complain about the same thing ALL the time, no matter what it is, no matter how much we love and respect the person doing the complaining. It’s not particular to physical pain, it’s a human condition, and comes back, somewhat, to the ideas of the difference in self and personhood and how these affect our understanding of time. I’m probably not making any sense, but the point is, I think, as I learned in my research with Julia, that differences in timescapes are crucial to ideas of illness chronicity and I am going to make this an important part of my research, and think everyone else should too, amen, the end.

One article did mention it briefly***, they  used diaries as their data collection tool, partly to help understand the ‘daily undulations’ of the pain experience (another article used the metaphor of music for the same idea. That is, chronic pain is not the same everyday, all day, and looking to the differences, the undulations, the ebbs and flows of daily experience can help us understand the experience in general). Good idea, those people.

Lots of talk of being ‘victim’ to pain, of disconnection and isolation. I’m going to have to challenge some of that. It’s not that I think it’s wrong, I think it’s over-simplified. I also think one doesn’t have to be rid of pain to reconnect, one doesn’t even have to accept pain to reconnect, and first let us define what we mean by reconnecting, by reconstructing a self?

(I have a vague idea of my drawing/creativity being the metaphorical thread of my own attempts to patch up a sense of wholeness, but we’ll save that story for another day).

I liked the phenomenological idea that we don’t just have embodied experiences – experience, all experience, is fundamentally embodied, whether we are aware of it or not. No Cartesian duality here, thank you very much. The same article said that pain makes us prisoners of our own bodies, which I thought ironic, because mate. Didn’t you just argue that ‘us’ and ‘our bodies’ were the same thing? And also, if you want to look at it that way, we’re all prisoners of our own damned bodies.

from Schaubuhne’s Hamlet

(I feel a desperate need to quote Shakespeare and mortal coils, and whether it is nobler in the mind to suffer the slings and arrows of outrageous fortune, or take arms against a sea of troubles and by opposing end them?)

(I swear. That man was the cleverest of clever things ever.)

There’s probably more, but I’m due at a physio (not for me) and need to do some more reading around the whole self/personhood thing.


*Svanaus, F. (2015). The phenomenology of chronic pain: Embodiment and alienation. Continental Philosophy Review, 48,  107-122.

**Shilling, C., & Mellor, P.A. (oops, forgot to note the date). Saved from pain, or saved through pain? Modernity, instrumentalization and the religious use of pain as a body technique. European Journal of Social Theory, 13(4), 521-537.

***Broom, A.F., Kirby, E.R., & Adams J. (2015). On illegitimacy, suffering & recognition: A diary study of women living with chronic pain. Sociology, 49(4), 712-737.

repetition, the self, and mate, i have no brain

I’ve just read over the last few months posts all together for the first time, and it’s weird how often I repeat myself. Sorry. It’s unintentional; each repeated thought feels in that moment like a new and important one. We’ll take it as read from now on that the pain is daily, muteable, and I don’t like it. ‘Kay?


I’ve totally forgotten that I haven’t submitted my ethics application yet. Ooops. Reason #120,923,092,585 that I can’t take dumb-head thick-brain meds and PhD at the same time. Or maybe it’s just middle age.

Nah. Definitely the meds.


collage enough clown

Still drawing and making though. At least there’s that. Also have been reading way too much academic literature on autoethnographies and it’s making me punchy. Going to take a break (and complete all the documents that should have been completed months ago, YES I AM RIGHT AWAY AND I’LL DO A GOOD JOB TOO PLEASE DON’T FIRE ME I’M SORRY) and look at something more fun, like … okay, academic literature is not fun. Something different then.

How about temporal asymmetry? I have zero idea why I downloaded an article on temporal asymmetry; it basically describes the human tendency to value immediate ‘pleasures and pains at the expense of distant ones’. E.g. having a sit down and drawing something to avoid the bastard neuritis right now instead of taking the time to submit an ethics application that will be helpful in the future. Patrick Stokes* argues that whatever the rationality or irrationality of this temporal bias, it has something useful to say about how we create a sense of self.

[Now I remember what interested me in it; I wanted to learn more about self and identity in order to learn more about the point and place of autoethnographic research. All roads lead to punchy today. I think I’m getting punchy about autoethnographies because they lean so heavily toward people writing about self to be understood rather than writing about self to understand. I think memoirs tend to do the opposite and as such are far more interpersonally connecting. I’m not suggesting that writing to be understood is wrong per se (particularly when writing from a place of marginalisation; also what the hell do I know?), but I am suggesting I don’t want to do it that way].

think the basic thesis is that there is not one single ‘all-purpose self’, but a more dynamic kind of interaction between our memory of the past, anticipation of our current and near future, and the more distant future. And these are not created equal; concern for our own past pain experience can be incidental, but anticipation for a future pain experience might be great, as one example. I think this is highly relevant to both autoethnography and chronic pain, because I think both the certainty and uncertainty of my kind of pain is temporally messy (I know it’ll show up, but I don’t know when or how strongly or for how long) and hard to integrate into a sense of self at least partially for that reason. And, as a third person temporal perspective is very different than a first person (you could be more concerned for my past pain experiences than I am, or less concerned for my future pain experiences if you know I won’t remember it afterwards, as two examples given in Stokes’ article), this matters for how we understand other people’s experiences of pain, and how we communicate our own with someone else. This is especially relevant, I think, for doctor/patient and workplace interactions.

Okay, I don’t really know bugger all about it, but I do know we are ‘temporally placed beings’ and that this is a rarely analysed but crucial aspect to illness in general, and pain experiences in particular.

Stokes goes on to also discuss the difference between the self (‘a phenomenal entity’) and a person (‘an intersubjectively known and re-identifiable bearer of various kinds of physical, social and practical indentity’ (sic).  I.e. I experience as ‘self’,  I am experienced as ‘person’). Also dynamically interactive, very relevant, important, useful, etc., but I’m going to leave it there because there is only so much philosophy one can tolerate in one’s day.


*Stokes, P. (2016). Temporal asymmetry adn the self/person split. The Journal of Value Inquiry, 51, 203-219. doi: 10.1007/s10790-016-9563-8

postcards from the armchair

drawing collage 2

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

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

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

a placeholder, just in case

Like I said, given the choice I would stick to what I’ve already started, so that’s still Plan A (or B, or C, I lose track).

But, if I do have to think about years of managing neuritis I may have found a reasonable solution that will not only allow me to finish the PhD, but give me the mental energy to carry on with some marking and tutoring, both of which are also important to me. It isn’t the solution I was going to write about yesterday (but includes a lot of the best elements), because after I wrote that post I just kept thinking – if drawing doesn’t exacerbate the pain and helps me feel mentally much better, I should really find a way to draw?

collage gn

So I went searching this afternoon and found that graphic memoirs, especially illness memoirs, were a thing. Who knew? There is some research done on different aspects of these kind of narratives but (having only spent a few hours on it so far, don’t quote me) a wide open space right up through the middle of them to conduct further research. I am wondering about a combination of analysis of other’s work, and drawing a memoir of my own research (and how it came to be my research) to sit along-side that analysis. There could be a lot of different aspects to it, looking at visual storytelling as a research method, how illness is represented in these kinds of books, the point of representing illness in these kinds of books, and as a possible way to translate academic findings into something more accessible. To name a few.

This quote from Quesenberry and Squier, 2016:

Ultimately, our sense is that graphic memoirs of disability, illness, and other types of difference share many characteristics with more traditional, exclusively textual life writing forms, though in graphic life writing the visual dynamic—involving the connections and disconnections between the verbal and visual—produces specific engagements with disjunction, complexity, and the ineffable.

I don’t know about you, but the words disjunction, complexity and the ineffable get all my artsy researchery goosebumps going.  And yes, it’s kind of the Master’s thesis redux, where blogging is swapped out for graphic memoir, but that’s not necessarily a bad thing. That’s building on what I already know and making use of what I have already done.

Also, drawing.

Other Things to Like About Plan H (or D or E, F, G, I lose track):

  1. I could further the research on the idea of small freedoms that I introduced in the Master’s thesis. I think it’s a really useful idea in all different kinds of resistance, and I didn’t get to explore or explain it in enough depth. I could look into that more here.
  2. It allows for the possibility to include humour*. I find a difficulty with a lot of memoir, and research, and illness narratives in general is how seriously they take themselves. Life is funny, even when it’s hard, and sad. I think so. Super Adequate Woman thinks so. It would be very satisfying to bring some element of humour into my research.
  3. It could also include ideas of the beautiful awful, the social gaze, protest art, to name a few of the previous incarnations of Ideas I Have Had. They can all be part of both researching and creating a graphic memoir. In Search of The Green Man has a nice ring to it, don’t you think?
  4. Oh yes, and mythology! I was so keen to use mythology in the Master’s but never could quite make it work. It could work here.
  5. As above, it very much ties in to the book that got me all excited about artifacts of loss in the first place. In the interment camps, the Japanese American’s used what was around them to create art and crafts to brighten their tiny homes, to bring some joy into their lives, to feel more human. I can see this as a way to use what I can still do (again, yes, let’s hope it’s temporary etc., and so forth) to contribute to the field of critical health psychology, and bring some joy into my life while I am doing it; a creative artifact of my own loss. Did that make sense? I will be able to explain it better when I’ve thought about it more, but I know there is a link there. Oh, probably they are both examples of small freedoms inside the generally restrictive world of habitus. All my roads seem to lead to Bourdieu.
  6. I probably haven’t explained what it is about the current research that I feel unable to do? It’s all the travelling and the interviews – the thought of driving all over town and giving the kind of sustained and empathetic attention the participants deserve – it sounds pathetic, and I loathe writing it, but as things stand I’m not up to being able to do all that very well. The driving alone will kill me.

I know there were other things I wanted to briefly note, but I’ve hit my concentration limit and have forgotten them all, and none of this might ever be needed in any case. I’ll close the laptop now and pop off for a cup of tea and a bit of Netflix. I’m expecting to hear from the neurologist again this week, and once I know what she has to say about next steps, I can decide whether to jump the current ship or just keep rowing.

Supervisors willing, of course*.


*eff everything croppedI made this graphic in photoshop one day when I was at my worse and couldn’t even sleep, before I was prescribed suitable pain relief (which I have had to stop for a while so I have the thinking ability to mark essays, because I tried to mark a few last week and just couldn’t tell what was good or bad about them, despite being sure I would be able to. Essays are easy! Bugger that to all damnation. So, now the pain is creeping back – Scylla and Charybdis, etc.) She (I forgot what name you gave her, Veronica?) still makes me smile, every time I look at her.

**I think I can hear Kerry grumping*** at how I am wasting time writing about all this palaver when I could be getting on with the research we’ve already started. Fair enough too. It’s just – I’m sad. Not depressed, not anxious, not panicking. Just very sad. And this cheered me up enormously, so a Sunday afternoon well spent, I think.

***My apologies if I can’t. I’ll write out the sentence ‘I mustn’t put words in my supervisor’s mouth‘ a thousand times in penance. Well, I won’t, but I could download the Dragon software you suggested and recite them instead if you like.

i’m thinking about landscapes of memory and creating our understanding of what has passed and this poem is reminding me of something

All of which will make some kind of sense when I have the time to explain it, which I do not have today.

I Have a Time Machine

BY BRENDA SHAUGHNESSY
But unfortunately it can only travel into the future
at a rate of one second per second,
which seems slow to the physicists and to the grant
committees and even to me.
But I manage to get there, time after time, to the next
moment and to the next.
Thing is, I can’t turn it off. I keep zipping ahead—
well not zipping—And if I try
to get out of this time machine, open the latch,
I’ll fall into space, unconscious,
then desiccated! And I’m pretty sure I’m afraid of that.
So I stay inside.
There’s a window, though. It shows the past.
It’s like a television or fish tank.
But it’s never live; it’s always over. The fish swim
in backward circles.
Sometimes it’s like a rearview mirror, another chance
to see what I’m leaving behind,
and sometimes like blackout, all that time
wasted sleeping.
Myself age eight, whole head burnt with embarrassment
at having lost a library book.
Myself lurking in a candled corner expecting
to be found charming.
Me holding a rose though I want to put it down
so I can smoke.
Me exploding at my mother who explodes at me
because the explosion
of some dark star all the way back struck hard
at mother’s mother’s mother.
I turn away from the window, anticipating a blow.
I thought I’d find myself
an old woman by now, traveling so light in time.
But I haven’t gotten far at all.
Strange not to be able to pick up the pace as I’d like;
the past is so horribly fast.

the poets always beat me to it

SONY DSC

Little tin key
lost somewhere in my memory, returned to me in a dream.

Like the blue-burning match blowing over the surface of
some drunk girl’s sweet, flaming party drink. Happy
birthday. Lucky

coin rubbed away to nothing, turned back into invisibility.
Back into its first atomic energy. Both

lost forever now and all around me. I’ve
rendered it, it seems, back into its
first longing — to keep

safe the loved ones on the plane, or on the freeway, or
strapped to the gurney, opened for the surgery, wheeled
into the lobby, being

screened for the journey, or stamped with the date
at the entrance to the pool, the portal, the nightclub, or

any spot where one might pull to the curb, drop
off a soft target, kiss it, make
with it a plan to fetch it later —

unbloodied, still breathing, in no hurry. This
talisman with no magic. I’ve made it for you

out of your own flesh, teeth, hair.

the refraction of longing

SONY DSC

The world is full of paper.
Write to me.

– Agha Shahid Ali, Stationery

Longing: both a noun and an adjective, a word that describes a particular kind of desire, of wanting something that perhaps you don’t, or can’t have. I’ve never really been able to describe longing very well, there’s a kind of melancholy there, the same kind of melancholy associated with nostalgia? I don’t know. One of the suggestions in the last supervisory meeting was that there may be a similarity in the stories of shadow objects, where there would be more variety in stories of objects that person does have, which might be true. So I have been wondering about what sort of emotions shadow objects might be centered around, and I wonder if perhaps it covers the many shades of longing? Veronica spoke of craving and desire, and I didn’t recognise it at the time, but I think she was talking about longing too.

I have a fascination with the idea of longing, so I’m not surprised (and I also am surprised because it wasn’t intentional) that I found myself a way back to spending time with the idea. There isn’t all that much literature on longing, or yearning, not even total agreement that it’s a distinct emotion at all, but I did find this science-y definition (written almost 20 years ago now, I’m getting old).

Longing is mainly a blend of the (primary) emotions of love or happiness and sadness or depression … It is experienced as a need for something – a thing, a state, a relationship – without which one’s life does not feel complete.

Holm, O. (1999). Analyses of Longing: Origins, Levels, and Dimensions. The Journal of Psychology, 133:6, 621-630

And perhaps it is also as Marilynne Robinson wrote in her novel Housekeeping, that it is the very fact we crave an object that keeps an object, a state, a relationship, with us.

(She also describes the absence as a shadow and she’s a literary genius, just saying…)

To crave and to have are as like as a thing and its shadow. For when does a berry break upon the tongue as sweetly as when one longs to taste it, and when is the taste refracted into so many hues and savors of ripeness and earth, and when do our senses know any thing so utterly as when we lack it? And here again is a foreshadowing — the world will be made whole. For to wish for a hand on one’s hair is all but to feel it. So whatever we may lose, very craving gives it back to us again.

Of course, saying all shadow objects are connected to longing, to yearning, is a little banal; they wouldn’t qualify as objects that cast a shadow if there were no desire for them in the first place. To crave and to have are as like as a thing and its shadow. But the banality of my wonderings is not the point: it’s the stories of why an absent object evokes longing in the first place that I’m here for. In those stories, I am sure, I will find a myriad of different motivations and emotions; longing, refracted into so many hues.

ripples and shadows and yes, try again.

7640537084_9d5f10c874_o

This seems to be the consensus from the supervisors, from my own internal compass of unfathomable attraction, to shift topics now while the shifting is still possible (or forever hold my peace). I’m off to the library today to pick up some more books that I had ordered on portraits and looking and disfigurement and I feel like an unkind lover dumping a generous and interesting partner for no other reason than I just wasn’t completely feeling it, which is really all the reasons I suppose. I tell myself it has no reflection on my goodness as a person that dead people’s things have more of an emotional pull to me than alive people’s adversities (though I don’t believe it), and I have been repeating Rumi’s phrase to myself all morning: there are a thousand ways to kneel and kiss the ground.

4442019292_f05d0c2528_o

8260746526_d35b4186fc_o

2396814535_20814ebdab_o

I used to visit op-shops and take photos of the abandoned and unwanted items left there for someone else to love, wondering at the histories and stories behind those things. Who bought them and who left them and why? I never found them sad places, just curious ones, and much more full of humanity than the retail stores, not least because of the ghosts of those stories.

I woke up to dozens of messages on my FaceBook page with comments and suggestions on my new PhD topic. A friend in Wellington (who just went through her own PhD oral defense – I’m pretending for the moment that such a thing doesn’t exist) pointed me to the work of Margaret Gibson whose book Objects of the Dead is about, well, objects of the dead. I’ve downloaded some of her academic articles too, which will be useful, but I was a little deflated with so much work already having been done by her and others in this area. I was also reminded of Daniel Miller’s The Comfort of Things, a book that played a big part in my decision to return to study, and, now I think about it, was likely in the back of my mind when I decided to research Julia’s blog (there are a few connecting dots, but that is a story for another time). But there was something in Margaret’s approach, or her approach as I viewed it having only skimmed a few of her articles (can’t find her book at the library, but I was in a hurry and probably didn’t look right) that was just a little sideways to what was on my mind, and it was another FaceBook friend who helped me identify what that sideways feeling was about.

Her name is Penelope Russon, and she’s also a PhD student, among many other things, not least of which is author of young adult novels. She told me that her book Only Ever Always  was written as a meditation “on things that I wrote after the [Black Saturday] fires, about the objects we treasure, and what it means if we lose these objects (or don’t release them). It’s compelling to think about the real object and the shadow object we carry in ourselves. Sometimes lost things are more precious because they are lost.”

(That my old blogging network is still giving me so much in this way – I met Penelope on FaceBook through an old blogging friend too – never ceases to amaze and humble. In truth, she contacted me, I would never have had the chutzpah to befriend her first, but I’m eternally grateful that other people are much less stuck up their own backsides than I am).

I had been half thinking about the spaces and the gaps of lost objects, but the shadow of them is an even better description, because they are very much still there emotionally, if not visible materially. I wondered (wonder) if there is much research done on these shadow objects, on those lost things that represent both a break in our connection to the people and places of our past, and a parallel strong connection, strong because the emotional impact of their loss itself maintains their presence. The shadow object that we carry in ourselves.

So, here we are back to ripples and shadows, perhaps not solely but at least in part. Ah well. It was always going to happen one way or another, I suppose.

i have an office now

It’s more of a desk and a bookcase (and a chair!) stuck at one end of my long skinny bedroom. There is a corkboard and fairy lights and a pencil holder. I bought it on New Year’s Eve as one in a series of changes I needed to make in order to never have as awful a year again as I did last year. You know that thing where you don’t realise how bad things had gotten until things get better again and look back and go, Holy Shit? Yeah, that. So, I bought a desk and a bookcase (and a chair) and now I have a dedicated work space I can retreat to and leave stuff out on and don’t have to balance study while answering a thousand really important questions simultaneously from the living room couch, as I have been doing for very many years: When can we get friend X’s present? Have you signed my form yet? My pants split and I need them for work five minutes ago. What are you doing? How do you unsplit butter icing? What’s for afternoon tea? Why are you doing that? Did you see the new trailer for Movie X? What’s for dinner?  Can I get a lift to friend Y’s house now and can we pick up friend Z on the way? Did you remember I need money right this minute for that important thing? Nobody asks me anything at my bedroom office desk.

SONY DSCI also bought a dog, so now I have to get outside and walk at least once a day (his name is Ernie and he’s a very handsome greyhound) except that I keep injuring myself in the process. Never mind, no torn ligaments thus far! Success! And I am once more taking the nasty immunosuppressant medication that I stopped because I didn’t need it to keep my arthritis under control, because it turns out I do need it to keep my immune system under control. No more itis’s for Megan! Just one full day of nausea every week instead. It’s a bit like going to an imaginary party every Saturday evening and spending Sunday hungover and recovering. Without the actual party. This never seemed like much of a good deal to me, but after those last six months I’ll gladly make such a pact with the pharmaceutical devil.

That was more words on unimportant things than I intended. But I like words. Words are good.

What I intended, instead, was to tell you about a great idea I had over the summer to read a pile of novels where one of the main protagonist’s had a facial disfigurement. You’d be surprised how many there are; it has its own library category. I didn’t get them read in time, but it’s still a great idea because how people construct fiction is very much, I think, how we construct our patterns of societal thinking (or vice versa, I don’t know – you say chicken, I say egg). Almost all the protagonists I can think of off the top of my head who have some kind of severe visual disfigurement are sort of tragic non-villain villains. Quasimodo, Richard III, Igor, Frankenstein’s monster …

…so imagine how it must be for people whose bodies are described as disfigured to have those stories of tragedy and villainy be society’s experience of the stories we tell about people who look like they do.  I think about the permanence of their visible difference a lot, the inescapable everyday-ness of it, how it must be to have a physical persona of difference (trauma? pity? despair?) thrust upon you. A persona that, I am sure, doesn’t much resemble the ordinariness of one’s internal identity. Perpetually navigating that disparity, perpetually explaining, perpetually forgiving, perpetually making allowances for ignorance and unkindness. I’ve only really begun to read the research on disfigurement, there is so much more to cover, but I do wonder if the very visibility of visible difference has been acknowledged and examined quite enough.

I had other words but I lost them.


I was in a rather polite argument with a very dear and old friend the other day, who literally believes Mr. Trump is God’s plan for the world, a divine reset for America as a light to the rest of us. Or something. She calls me a PC proselytiser, as if that is a bad thing. I might get a t-shirt emblazoned with it (to go along with my Nasty Woman mug and Feminist Killjoy pin). Which is to say, I loathe the current political climate of this vanishingly small planet as much as I did a month ago, but I am also on a far lower dose of prednisone and as such can now have those kind of arguments without the extreme levels of homicidal angst. Still. As my sister says; I don’t really recognise the world anymore.


If it wouldn’t eventually kill me, I might want to be on prednisone for the rest of my life. Nothing hurts, nothing itches, I can think clearly and I even get my washing done.