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This is a journal...

...in the same way that I am a person. You may find it interesting, or not. It may be real, or not. You decide.
There are stories. Icons can be found at Chromaesthesis.

Living with arthritis

When I was eight I began suffering from stiffness in my knees and hips. I was diagnosed with juvenile idiopathic rheumatoid arthritis at the age of ten, after extensive tests, including x-rays, CT scans, blood tests and once, painfully, the extraction of fluid from beneath my knee-caps. Rheumatoid arthritis is a chronic inflammatory disorder that occurs when the body's immune system attacks a part or parts of a body, usually joints. Sometimes when young people have rheumatoid arthritis they grow out of it, but in my case I have only outgrown the 'juvenile' part of the diagnosis. Idiopathic means that no-one knows what caused the arthritis.

Initially the arthritis was only diagnosed in my knees. For the first five years or so I experienced no pain from my joints, but a lot of swelling and stiffness. I found it difficult to bend down and tie my shoes, or sit on the ground, or get up from the ground. When I was fourteen or fifteen, a new round of tests showed that I also had arthritis in my hips, which I had suspected for a long time. Various treatments around that time gave me back an almost full range of movement in my joints, and got rid of the swelling. Three years ago my mother's death and my emotional turmoil exacerbated my arthritis and I began to experience a lot more pain.

I have always had days when I am perfectly fine, with no pain and lots of energy. But I also have bad days, and there are things that can set off pain, and I often feel low on energy or difficulty getting up in mornings. For the most part, the good days outnumber the bad. I am always aware of my arthritis, but I do not have to make too many concessions to it.

The trick - or at least a trick - to living with a chronic illness is to figure out the limits that it places on you. For example, I can walk longer distances on earth or grass than on concrete, and I can cycle or swim, but I cannot run. Even standing for too long a time can set off pain. I do not have as much energy as I would like. Stress, anxiety and depression all exacerbate my arthritis, as do some foods.

Once you know these limits, you can learn how to work around them, and when and how you can push them. Determination - or outright stubbornness - helps here. It's also important to know that your limits change - they are affected by medication, levels of stress, how much sleep you've had recently, the season - illnesses can be chronic but they are NEVER static.

The most important think for friends and family of someone with a chronic illness - I think - is for them to respect our limits. I don't need people to be solicitous, but I need them to accept that I know my arthritis and my body, I know what I can and can't do, and if I say I can't do something - that my arthritis won't let me - I know what I'm talking about. I haven't had many problems in this regard - thankfully! - but when it has happened, it has been incredibly frustrating.

This also extends to doctors, though there as well I've been very lucky. I've tried a couple of different treatments for my arthritis, and my doctor has respected my opinions on them. I changed medications when one wasn't working for me, and I vetoed another because the side-effects reminded me too much of chemotherapy, which had negative emotional connotations. 'Negative emotional connotations' is super secret code for 'I almost had an emotional breakdown when the side-effects were described to me'. Once I had calmed down I decided that the benefits weren't worth the possible side-effects, the stress, or the means of administration - a tri-weekly injection.

Rather than 'fighting' or 'living in harmony' with my arthritis I prefer to think of it as something to be managed. 'Fighting' is too active a term. If my struggle with arthritis is a war, it is a cold war, full of posturing, hostility, and gradual, grating attrition. I object to 'living in harmony' on the principle that harmony implies agreement, and I do not agree with the intentions of my arthritis.

So I manage it. 'Management' is my mother's term. She managed terminal cancer for nearly five years after the doctors gave her five weeks. The principle is acknowledging that yes, I have a condition, and yes, it affects my life, but I can work around it. I respect the arthritis but I don't have to like it, and I am not resigned to it. It doesn't have to mean my life is any less fulfilling.

It's like in the poem - "So it is, and so it will be, for so it has been, time out of mind . . . I know. But I do not approve. And I am not resigned." The context is different, but the sentiment is perfect.

Stone Giants

In Norse mythology and that of the British isles, giants are associated with hills and mountaintops. Ancient, ruined structures and stone circles were sometimes attributed to giants' attempts at building. The giants are also fond of stone-throwing contests. Standing stones were sometimes said to be the remnants of these contests.

"The tradition in the neighbourhood respecting this stone is, that it was thrown there by a giant from the top of a hill called Gogerddan, more than a mile distant. This giant and another, his neighbour, who dwelt on top of a hill called Esgair, near Llymysten, fell out, and had recourse to hostilities in a way worthy of giants, by throwing huge masses of rocks to each other, from the tops of the hills upon which they dwelt."
- Morris Charles Jones, "The Feudal Barons of Powys" in Powys-land Club (eds, I guess?), Collections historical & archaeological relating to Montgomeryshire, Volume 2, London: The Club, 1869, p. 328.

I've recently been re-reading both Tolkien's novels and C.S. Lewis's Narnia books, and both have instances of stone-throwing giants in them. They show up when the protagonists travel through rocky, cold, sometimes mountainous land and make it a bit more hazardous.

"When he peeped out in the lightning-flashes, he saw that across the valley the stone giants were out, and were hurling rocks at one another for a game, and catching them, and tossing them down into the darkness where they smashed among the trees far below, or splintered into little bits with a bang."
- Tolkien, J.R.R., The Hobbit, 1937. London: George Allen and Unwin Ltd, 1975, p. 68

In The Hobbit the stone giants live in the Misty Mountains are appear accompanied by a thunder-storm. They toss around rocks, and are generally primal and awe-inspiring, but don't play much of a role in the narrative save as backdrop and a reason for the dwarves and Bilbo to hide in a cave.

The giants of The Silver Chair are of a quite different category. They live in, or perhaps on, Ettinsmoor, and it is a fine, if cold morning when Jill, Eustace and Puddleglum come by.

"There seemed no end to the line of giants, and they never ceased hurling stones, some of which fell very close."
- Lewis, C.S., The Silver Chair, 1953. Bungay: Penguin Books, 1965, p.75

They throw stones in a game of "cockshies" (pp.74-75) which quickly breaks down into an argument and fight. These giants are quite dim, and more alarming in their incompetence than in their power.

Personally I prefer Tolkien's giants, who are grand and terrifying in the mountains and thunder.

Adventures in Academia

One tends to expect a certain degree of competence from published books, particularly collections of academic articles. But no.

Today in my reading I came across Women in Indian Politics (Sinha, Niroj ed., Gyan Publishing House, New Delhi, 200). The article I was particularly interested in here was "Women's Participation in National Freedom Struggle" by Niroj Sinha, and I suppose the missing definite article in the title might have warned me it was not quite up to scratch. At first I put the problems down to second-language writing. They certainly seemed to be consistent with that diagnosis: peculiar word order here and there, missing pronouns and so-on. It wasn't until I started coming across egregious mis-spellings such as stayagrah instead of satyagraha that I began to suspect the copy-editor had been asleep.

Then, on pages 76-77, proof of the crime: two organisations, the National Council of Women in India and the All-India Women's Congress feature prominently in the 1920s. As one might expect, Sinha uses acronyms rather than write out the whole titles of these organisations each time. So we have the NCWI and the AIWC. No problem. Only here, a few sentences later, a reference to the WIA, no explanation given. Then again, the WIA. Then the WTA, then (horror of horrors) the AIMC. This is not just the fault of a poor copy-editor; this is a non-existant copy-editor, not to mention laziness on the part of the author. How difficult is it to read through the article and rationalise the acronyms?

"Vicariously"

All of this news over the Upcoming Royal Wedding prompted a look tody into the word "vicariously". Te largest dictionary in my house is also (I believe) the oldest, a two volume 1950 shorter Oxford in faded blue cloth covers. It says that 'vicarious' means substitution, representation, and a passaage I found particularly interesting, "of punishment etc.: Endured or suffered by one person in place of another; accomplished or otained by the substitution of some other person, etc., in place of the offender."

...In essence, it's talking about martyrdom. There is certainly a theological element to the word - consider 'vicar', nowadays (so far as I know) entirely theological, but once meaning only 'substitute': the vicar was the minor clergyman standing in for the rector or the pastor in a parish (My father, only a little more antique than the books, was rather surprised by the connection between the terms. I had joked about it prior to looking up the word, but I wasn't expecting 'vicar' and 'vicarious' to be at all related. More fool me, then).

Today, though, the word is used not so much to mean substitution, but rather (as my dear friend WordWeb puts it, "experienced at secondhand". Which is how we get "living vicariously", as in people who read gossip magazines and are fascinated by celebrity.

The word has turned backwards on itself. Taken to extremes, rather than a life of selflessness and self-sacrifice, the vicarious individual is a more like a leech, experiencing everything through how it happens to others.

And I find that inversion fascinating. Wonder what that says about me...

The dangers of multitasking

Me: I have an essay due tomorrow...

James M: Essay on what? On spies?

Me: On a play about stars. Whoops, pies. Fuck, spies.

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Diana Wynne Jones helped shape my brain. I'm not sure how else to say it.

I don't remember, thinking back, how I first encountered her books. There was quite a spread of them on the children's shelves in my local and school libraries; I was a voracious reader, and it's entirely possible I just found one and decided I liked this stuff. Equally possible is that my sister recommended them, or one of the school librarians, either the kind Sue or the intimidating Chris. Maybe my mum found them and introduced us - she also loved books and .

I also don't remember a time when we haven't had at least a few of her books on our shelves. Fire and Hemlock and Hexwood are two books that we've had, seemingly, since forever; I've always liked the fact that Hexwood begins on the day I was born. A Tale of Time City joined these two when the library sold it; The Tough Guide to Fantasyland was a gift. More recently, The Pinhoe Egg and House of Many Ways have joined these.

However. I am not going to talk about Diana Wynne Jones's novels and the effect they've had on my mind (it is great, but I am not feeling particularly eloquent and truepenny has said it very well here

Instead I am going to talk about The Tough Guide to Fantasyland.

The Tough Guide to Fantasyland is a book about what happens when writers treat fantasy like a theme park. These elements are expected; mix and match as appropriate. It's a smaller and less comprehensive version of TV Tropes without the examples. The Tough Guide was my first step, at age nine, along the road to the deconstruction of texts. And that is pretty special. It taught me how to read a book and say I see what you did there. To look behind the mesmerising words and stories and spot the substance they conceal, or to look behind them and realise that there was no substance.

Five Things

1. I am, as of the beginning of March, a university student. Oddly enough, this hasn't felt like a particularly big change in my life. I suppose I have experienced larger, and this particular change is, at least, one I was ready for.

It was at first a bit of a shock to go back to one hour - well, fifty minute - lessons after the hour-and-three-quarter ones in Germany. Lectures seemed so short - how could you possibly fit enough in? I still think that it's a bit ridiculous for some courses - I would be able to sustain interest for more than an hour in my history and theatre papers at least - easily, even. Tutorials, too, feel squashed.

Italian is an exception to this. A problem with languages is that the very basics of them - verb conjugations etc - have to be memorised, which means a lot of repeating and reworking this material from various perspectives. And I mean, I know it's neccessary and useful and all, but it's not exactly enthralling. My lecturer is a lovely woman, but tutorials and AV classes are not all that they could be. Still! At least the teachers are competent, which after last year's German class I am counting as a blessing.

I am still finding my feet on the social side of things. I'm sure it would be easier to meet and sustain conversations with new people if I was living in a hall of residence, but I'm not. Living at home is good in some ways and bad in others. The worst part is the commute. On Thursdays I spend more time on the bus than I do in class.

2. Last Saturday was my eighteenth birthday.

I also had a cold, which has gotten worse and then better again since then. So I haven't really celebrated, and to be honest I am completely out of the habit of celebrating birthdays. I haven't had a party since I was twelve.

3. Today it is raining. At times it falls heavily, at other times almost torrentially. It's one o'clock but the day is grey and green and full of water. The camellia by the front door is covered in pink blossom. I suspect they may begin to rot.

4. I have been watching youtube videos of David Tennant's Hamlet. I will be performing a short excerpt of Hamlet in my Theatre tutorial in about three weeks. I may audition for a role in a production of Hamlet in about a month. Who knows if I'll get one.

5. Diana Wynne Jones is dead. I believe she died of lung cancer. More on this later.

A conversation at a music lesson in 2010

"-because modern song lyrics suck, have you noticed that? It's always the same set of fifty or sixty words and tired phrases. Cat Stevens once wrote a song called 'I love my dog as much as I love you', and sure, it's not exactly romantic, but you can appreciate the honesty. In the fifties they just wrote songs about anything -" because the world was going to end anyway, I remember - or was that the seventies? The savour's gone out of life, the musical era's entered its decline. The same fifty words repeated over and over until they become irrelevant. So what comes next?

"What would happen," says one student, "If you took twelve instruments and got each one to play one of the twelve tones, and then mixed it around? The horn playing F# switches to B, and the flute that was playing B switches to F#?"

"You don't want that," the teachers says. "Not for more than a moment. It'd just create a big wall of sound."

"It'd hit you in the face," says another student.

"Yes, I can see that," says the first without offence. "The idea seemed much cooler before I actually thought about it."

"Ideas often do," the teacher says, amused. "But if you did that..."

"You've just ruined everything," he agrees. "You've made a lawnmower." So that's not where the next era will come from, but then it's always hard to see such things. Though romantic was a logical follow-up to classical, Beethoven wouldn't have imagined it.

Oh, I almost forgot

On Monday Jenny's German class went to the cinema to watch a film. It was called Goethe, or possibly Goethe!, though I think it would benefit from losing the exclamation mark. It is basically a fictionalised account of how Goethe came to write The Sorrows of Young Werther. In fact, from what I read on the wiki, it seems the film was highly romanticised. I find that amusing. I would be interested to find up which bits in particular were based on fact and which were fictitious.

A review on imdb that seems pretty accurate

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But is probably not as interesting as that makes it sound. Yesterday was the last day of the school term over here, and school finished at 11 o'clock. About two classes' worth of people were spotted afterwards wearing tacky sombreros. I'm not sure why, but who needs to know the reason behind all of life's mysteries? That would ruin the fun. So far, the length of every line I have written has been the same, although it took a bit of editing on that last one. I wonder if I can keep up the streak? If so then I will add a screen-shot somewhere down there below.

Germany thingsCollapse )


And that brings me, in a slightly round about route, to my fairytale...

Once upon a time there was a servant who was friends with the king's son.

Now, the king had many sons, and the servant was not friends with the eldest, or with the youngest, or the third child; he was friends with the second-eldest prince. And they were good friends, and they had gown up together; they spoke together of all things, and trusted each other best of all.

The kingdom they lived in was not large, but neither was it poor; it had the best harbour for miles, and the deep river allowed for much trade. The people grew olives and oranges and lavender around the kingdom's one large river, and many had some small talent at music or magic.Collapse )

Things

SO I GUESS I haven't been around much lately OH LOOK OVER THERE, WHAT'S THAT?

Never mind, it's gone.

I am currently on the other side of the world from where I normally am! In Germany! Back at high school just after I'd finished there :E

It's snowed here. We normally never get snow at home (well, there was that one time last year... but ti wasn't like it actually lasted). I may have a white christmas for the first time in my life. In some ways it's quite difficult here, because although I've learned German for three or four years it was a very piecemeal and inconsistent education, so I don't understand very much of what is said. Though I'm already better at it than I was when I arrived a week ago.

I've actually understood a fair amount of the written handouts in classes, though. I've always understood things better in reading and seeing than in listening - it's part of the reason why my sight-reading is so good in music, but I'm not good at improvising or picking out accompaniment. Nevertheless I was quite impressed by my ability to understand vector maths in German despite the fact that I'd never done vectors before.

On Wednesday my exchange partner's chemistry class went on a field trip to the Süd Zucker sugar refinery (the name means south sugar). That was about two hours to the north by bus. I could see the difference as we went north: in the city where I'm staying everything is white with snow, but as we went north the snow disappeared and the whole landscape was grey and green and dripping. At the refinery they make sugar out of a root vegetable - a sugar beet. I wasn't originally certain that there was such a thing, and I thought the vegetable might be a parsnip, but I'm told that it was in fact a sugar beet. So taht's all well and good. There's a big production line process where they wash the things and mash them and soak them and refine the syrup, and they showed us around the factory. Outside the temperature was around 3-5 degrees and it was raining, but inside by the big vats it got up to about 25 degrees. We all got fed there, and then we got free stuff, including a couple of recipe books.

On Saturday we went to the Weinachtsmarkt - Christmas market - in the city center. It was evening, and everything smelled of cider and snow and smoke and cinnamon. It was raining, and there were many buskers. Although a lot of them were quite young and as a consequence not that good, one man playing christmas tunes on an old accordion fitted perfectly into the atmosphere, the uneven cobblestones and the old architecture.

There's so much time contained in this city. So much time that's gone into making it. New Zealand is by contrast a very very young country.

I've been reading a couple of books of Ursula le Guin's short stories while I've been here: The Wind's Twelve Quarters and The Compass Rose. Although some of the stories, particularly in The Wind's Twelve Quarters are early and quite naive compared to her later works, many of the stories are still capable of striking tremendous chords in me. I particularly recommend Winter's King, Sur and The Author of the Acacia Seeds, which may be one of the reasons why I'm going to study Linguistics next year.

Trains

The sky is distant, vacant, as if it wants something to believe in. It's the mystery of public transport, sharing body heat with strangers. Frost at the side of the tracks. Bracken and glass. Morning.

At night I can almost believe that I'm somewhere else. Street lights are stars and we whiz past constellations; myself and a host of strangers, dim/bright light and murky upholstery, rattling doors and more distance than you can possibly imagine.

It doesn't last; and after all, it's not night. The sun is blue, the sky an empty hole. The towns have their back to us, foundations and concrete, iron and dirt.

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