Keeping the wolf from the door

As someone who copes with a chronic disease herself I am interested in the language people adopt when speaking of their own or other's illness. Over the summer there was a lot of discussion on this subject with respect to the descriptions of Jade Goody and the cervical cancer that caused her early death. The media adopted the language of war: Jade was 'brave', was 'battling'; she 'fought the cancer', and was 'shell shocked'. These are common terms when speaking of cancer; in particular it is noticeable that the possessive pronoun tends not to be adopted with cancer, in contrast to other diseases. People rarely talk of my cancer, whereas they will own some other conditions - my diabetes, my asthma, my eczema. Perhaps this reflects both the sudden onset or at least discovery of cancer, coupled with its life-threatening capacity (although many other chronic conditions are life-threatening, it is true that thousands of sufferers live out full lives).

Cancer is perceived as the enemy above all other life-threatening conditions, and the language adopted is therefore the language of alienation. Cancer is the Bogeyman, the monster that lurks under the bed; it is strange, it is bizarre, it is unknown, it is unpredictable. It is Other. Sufferers use this idea to visualise the cancer, to gain mastery over it in a way that is not done with other conditions where the link between the psyche and the physical has more convincing proof. It is the cancer; it is not my cancer, for to admit as much would be to allow cancer a foot in the door. Yet cancer above all health defects has its origin in the human. Cancer is our own cells, dividing normally, but forgetting to stop. Cancer is termed aggressive, yet the processes are the same as that required to initiate and sustain life. Cancer is imagined as a terrorist, waging guerrilla warfare inside our fragile bodies; yet cancer is often of our own making, quite literally at the cellular level and also through our insistence, despite all our knowledge of the evidence, on exposing ourselves to environmental conditions, diet and toxins that are inconsistent with healthy long-term cellular processes.

When I am talking to dermatology patients about self-management of their condition I avoid personalising the diseases. I talk of their skin, but the eczema, the psoriasis. Even this is misleading: how can it be their skin, when even the normal epidermis cell sheds and is reborn every 28 days, and the psoriatic skin cell turns over in just 4 days? I too do not like to talk of my disease, my lupus. Yet this disease, like cancer is in many ways of my own making. Systemic lupus is autoimmune: all my symptoms arise from an immune system gone into overdrive, creating a cascade of chemicals that form large complexes. These circulate and cause inflammation in joints, in skin, in blood vessels. The triggers are suspected, but not known. Sunlight exacerbates, but is probably not the initiator. Viruses and hormones are more heavily implicated - indeed, my symptoms started when I was pregnant second time around. Of course, I don't blame the child; but neither do I take responsibility for the disease myself. It is Other. It is The Enemy.

And yet...the battle waged when dealing with a life-long condition, that is potentially life-threatening, is exhausting. I take pills every morning, and have done for 6 years - and will do for the rest of my life. I take pills to protect me from the pills. Every time I feel under the weather, I wonder if a flare up is coming. I get my bloods checked, I attend hospital appointments. Options are reduced. Travel is more difficult. Sleep can be elusive. Plans must be held lightly. Sometimes I adopt an attitude of seeing lupus as part of me, integral, and wonder what life would be without it. I have learned much about myself, and been forced to lean on others. I have probably - although it pains me to admit it - become a nicer person, because of lupus.

Perhaps it is my disease, after all.

Busy doing nothing

It's the end of a long long week, at the end of a long long half term, and I've got the house to myself until 3pm. There are plenty of things I could / should be doing: cleaning and tidying, washing and ironing, finishing one article and proofreading another. Running on a treadmill. Raking up leaves. So far I have done none of these. So far I have done the following:

• Got up - sort of - and eaten breakfast
• Read a magazine
• Put some washing on a line
• Gone back to bed
• Read a book in bed
• Got up again. Found some clothes this time. Cleaned my teeth. Cleaned the bathroom (only because I want a shower in less squalid surroundings).
• Rang work with 'just a thought' about a patient I saw yesterday
• Made coffee and a marmalade sandwich, Paddington Bear style
• Sat here writing rubbish.

And, er, that's it...

Am now feeling sort of guilty. Or at least, anxious that this waste of time will ultimately catch up with me, and I'll be forced to pay some penalty. I probably wouldn't feel nearly so guilty if I had Done Nothing with a friend or family. It's the knowledge that others are hard at work whilst I fritter time away that's eating me up.

But not enough to make me want to actually do anything.

Now, where did I put that book....

Riding in cars with girls

Having written off our car (not me, the Man, in case you ask) we are awaiting the delivery of a very nice Skoda Octavia with lots of bells and whistles on it. We did our homework and knew what model, spec and age we were prepared to pay for, then asked Autosave to find us one. As we are without a vehicle we then couldn't be too choosy when they came back with an option that fulfills all our brief but isn't exactly the sort of colour we would have chosen. Annie (daughter no.2) is apoplectic, and may refuse to ever be seen in it. I may have to close my eyes when approaching it. I'm trying to be relentlessly cheerful, given all its other assets, but it's not easy...

My car is an orrible colour

My car is the colour of poo

It's got leather seats heated in winter

It's got climate control when it's hot

It's got wipers that know when it's raining

And then know when to stop when it's not - but -

My car is an orrible colour

My car is the colour of poo

It's got pockets the size of the planet

And a little light where I keep maps

It's got places to keep all my knick-knacks

And room to stretch out for a nap (not whilst driving) - but -

My car is an orrible colour

My car is the colour of poo

It's got 6 gears to change when I'm cruising

And 6 CDs lined up to play

There's sensors that beep when I'm parking

And scream when my parking's astray - but -

My car is an orrible colour

My car is the colour of poo

Its fuel consumption's impressive

And likewise its space in the boot

It locks with the press of a button

Its horn gives a fierce rooty-toot - BUT -

My car is an ORRIBLE colour

My car is the colour of poo

I've tried to deny

that it offends the eye

but the yellow-brown hue's

like something found on one's shoes

I've tried calling it 'gold'

(It's cappuccino, I'm told)

But the fact of the matter

is, despite all this data:

My car is an orrible colour

My car is the colour of poo!

Honest to God

Sang a new song on Sunday that the younger kids had written during the summer. Can't remember the words (except the line 'God you are healthy' - what's that about??) but do remember the verse valued chocolate as much as the resurrection, and implied that Jesus came at Christmas so we could have presents. I was very happy there had been no attempt to persuade the kids otherwise - the priorities were absolutely those of your average 8-year-old, and I'm sure the heavenly host joined in in the same spirit.

So how to follow this lead, as adults? Instead of singing songs that always reflect where we think we should be directing our thoughts, should we be more honest about where they're really drifting off to?

'Lord you have my heart
but only for an hour,
or else the dinner will burn to a crisp'.

'Here I am, Lord; it is I, Lord,
it's a miracle I made it here today.
I won't say, Lord, that I want to,
but I promise you that I'll still pray.'

Or perhaps we could articulate some of the everyday wonders that we discover as children of God. Stuff like: 'I sometimes get my knickers in a twist, but your love pulls me straight' (a bit 1950's chorus, that one); or maybe, 'thank you Lord, you saved me, from killing my husband, once more' (with verses that substitute husband for 'children', 'livestock' - pets doesn't scan - and 'neighbours'). A favourite for me could be 'Let me sleep Lord; let me lay down in your presence, and drift into your arms / O Lord let me sleep' - though perhaps not right before the sermon.

Songs could also reflect the anguish of living in a fallen world.

'O Lord we've gone and b*****ed it up
the world's in such a mess:
the air is poisoned, the seas are dead
the trees lie felled on the forest bed
and half the people are poorly fed
and so we all confess -

B*****ed it up, Lord, b*****ed it up
O Lord we've b*****ed it up.

Perhaps the lack of poetry expresses something of the heartfelt nature of that particular prayer!

Crouching Tiger, Hidden Grapefruit

The Man and I were idly wondering how the names of military operations get chosen. They can't be randomly selected (I'll have a vowel please Carol...and a consonant....) and even choosing an adjective followed by a noun could throw up some fairly dreadful combinations (hard to fire up the forces with 'Operation Fragrant Plantpot' or 'Shrugging Shoulders'. Names need to be something that fierce military generals can tell the President without laughing ('What are we calling this operation, General?' 'It's Operation Timid Otter, Sir' - er, no.).

So to come up with such wonderful names as 'Urgent Fury' (US invasion of Grenada), 'Purple Warrior' (UK Falklands training exercise) and not forgetting Desert Storm, there have to be people (person?) with that job, with military credentials and codeword clearance (not sure what that means, but they say it a lot on The West Wing. Hah! Only my 2nd post back and already I'm mentioning The West Wing! Did I say how good it was?). Perhaps they do other things as well - uniform design? Cleaning the situation room?

There have been a few awful names over the years. Frequent Wind, anyone (Vietnam)? Operation Bramble Bush (Israeli attempt to assassinate Saddam Hussein: no wonder it failed). Australia really weren't trying with 'Operation Morris Dance'. Seems a shame they don't choose names that spell things out, 'exactly what it says on the tin' style: perhaps Operation Gleeful Slaughter, Trained Scapegoats, or Unnecessary Carnage.

What I reckon is, the People That Choose have lists, one of adjectives and one of nouns, all approved by some committee. It is then a simple matter to select the next word from each list. Try it for yourself. Select one from the following:

Mountain, breaking, definite, steel, red, sleeping, restoring, exotic, screaming, desert, cautious.

The add a second word from the following list:

Dragon, cedar, wind, cobra, fire, eagle, cactus, tiger, storm, charge, hope.

(Nearly) works for all options!

Most of the good names are very macho and purposeful. Would we get a different kind of operation if we chose names like 'Little liedown' or 'Touchy feely'? Perhaps I'll suggest it to Obama, he seems like a nice bloke.

Especially for Steve...

So this is the equivalent of me popping out to the postbox calling 'back in a minute' over my shoulder and then not returning for several weeks.
No I didn't get lost, but I did have other things to do (in particular learning to be a nurse prescriber; with proper pharmacology exams and everything!) and then failed to get back into the habit of writing anything except essays.

So here I am - back in the blogosphere - and delighted that more than one person has requested my return, though Steve asked the most so he gets a name check.

Now, there must be something I can write about...

I love my MP3

I don't know if I'm alone in this, but I could swear my MP3 has a little sentient creature living inside it. Not a scary Dalek-type creature, but rather more cute and friendly.

It started with the naming. Back when iPods started, Richard got himself a big old Creative Zen Touch (not as cool looking as an iPod, but rather more robust, with a massive memory and a lovely strokey-strokey control panel). Since it wasn't actually an iPod we christened it Pseudopod. Then he bought me a tiny Creative Zen V for my birthday (see picture) - aah, how cute is that! - so of course that became 'Diddypod'. And very happy we have been together ever since.

Now both Richard and I have noticed the tendency of our pods to 'bond' with us. This is particularly strong for Richard and his pseudopod, so much so that it started to play the only song in history (probably) that mentioned the name of the Irish town we were pulling into on a tour (and it wasn't Dublin or Belfast). That's spooky. It frequently selects tracks that are uncannily appropriate. Mine, too, seems to have a mind of its own, though it's rather less in tune with mine (although it seems to have my stubborn streak). For example, judging by how often it chooses them:

It likes Kirsty McColl, but not Suzanne Vega.

It likes Fiona Apple, but not Aimee Mann.

It really really hates '1234' by Feist, and will avoid it if it's in a playlist of 2.

It likes rather jolly and slightly novelty songs on the walk to work - Sparks, Ian Dury, Kaiser Chiefs (it really loves Kirsty McColl's 'There's a guy works down the chipshop swears he's Elvis', which obviously presses all of its buttons); and prefers more mellow stuff on the way home (suits me!)

It likes Prince when I'm in the gym.

Tell me I'm not going mad, that there is something other than coincidence to all this!

A Child of our Time

Richard and I attended a performance of Michael Tippett's 'A Child of our Time' on Saturday, which was a school performance aided and abetted by 4 professional soloists with local connections and a few professional musicians. Oh - and Jordan was in the chorus. I didn't know the piece at all, and my enjoyment of it was not enhanced by the extreme pain transmitted to my buttocks by the hard chairs. However, despite my amazement that the school managed to pull off a creditable if slightly under-rehearsed performance, I have to say I didn't appreciate the composition itself.

Tippett began writing this oratorio in 1938 in response to events surrounding a political assassination by Hershel Grynszpan, events which triggered widespread persecution of the Jews in the Kristallnacht (night of broken glass); the actions of Grynszpan were used by Nazis to justify their actions. Tippett took this concept of scapegoating together with his staunch pacifist sympathies (he was later imprisoned as a conscientious objector) and a bit of Jungian resonance to form the basis of his libretto.

Now I'm not really an appreciator of classical music. I like classical music; I don't like all of it, not by a long way; and I don't often know why I do or don't like something. I liked bits of this. But what I do have strong feelings about is words. And I didn't like these words. I found them rather naff, to be honest. Interestingly Tippett first took the idea of the libretto to T S Eliot, hoping that the great poet would write it for him. It's reported that Eliot declined on the basis that Tippett's music would provide the emotion, and that there was no need for further poetry. I reckon Eliot was being polite, and secretly didn't want to be saddled with such a restrictive brief ('I want it to be about a specific event, but also the universality of conflict, resolution, suffering and oppression together with a bit of acceptance, all wrapped in a Jungian subtext with a smidge of the Bible thrown in for good measure'). So Tippett wrote it all himself. Here's one of my 'favourite' bits:

MOTHER Oh my son! In the dread terror they have brought me near to death.
BOY Mother, mother! Though men hurt me like an animal, I will defy the world to reach you.
AUNT Have patience. Throw not your life away in futile sacrifice.
UNCLE You are as one against all. Accept the impotence of your humanity.
BOY No! I must save her.

...and so on and so on. OK so this is personal taste. But the thing I really objected to was also the thing this piece is often lauded for; the inclusion of several traditional African -American Spirituals. I understand that Tippett was trying to convey the universality of such persecution and suffering, across the sweep of human history. And they certainly worked well in terms of the music (and the words were a welcome relief too!). But I found it hard to stomach hearing about the persecution of the Jewish people alongside Christian songs such as 'Nobody knows the trouble I see'. 'Go down Moses' worked far better, reflecting the Jewish story as it did. Richard was of the mind that these songs were just as alien to the original faith and culture of the African slaves, so therefore they work well as a cross-cultural reference. But I kept wondering how this odd juxtaposition would sound to someone Jewish.

In these times we are perhaps more careful to respect the differences and celebrate the individuality of races and cultures, rather than to embrace the similarities. I am as much a child of my time as Tippett was of his (albeit Tippett was out of step with the prevailing culture, his counter-cultural stance was still one of 1938). I am not sure that I can lay aside my knee-jerk reactions long enough to really appreciate the thought process behind a work such as this.