Monday, December 31, 2007

Obligatory End of the Year Post

2007 might be summarised as moved house, then I was sick.

It's not been a bad year, nothing terrible has happened and even my health hasn't been disastrous. But very little has gone according to plan; it has been a year of great frustrations and a lot of those have been around the shortfall between what I wanted to do and what my health would let me do. Right now, I must admit, I feel decidedly negative about this. The nights may be drawing out but we're about to enter the darkest days for the immune system and mine is already decidedly ropey. Not that I am likely to catch anything that would carry me off or anything like that, but I really don't want to feel any worse than I do just now.

I think I will put down 2007 as a learning experience. I'm sure I have learnt a lot, but I haven't entirely ironed out my perspective on things and I'm likely to be rather dull and vague if I go there right now.

A little green stoolw ith sunflowers on itChristmas was mostly very good, thank you. My cake was a great success, so far as I can tell. Rather, uh, moist, but that was to be expected. Some of it has travelled as far as Snowdonia, would you believe? I saw Alexander on Boxing Day and it seemed that he was having a lovely time, even if he did get enough toys to furnish a large kindergarten. His favourite present had been a baby-baby-grand, so to speak, which he played all Christmas Day and then returned to, stark naked, after his evening bath.

A rag doll which doesn't look much like a pirateI gave him a stool which I had decorated and painted and a doll I made. He responded well to the stool in so far as he immediately understood that it was something to sit on. The doll is called Petal the Pirate (to be friends with Kettle - Petal doesn't look much like a pirate, I know but she is one because I said so). I wrapped Petal up such that she could still see out of the wrapping paper and as soon as Alexander spotted her eyes, he tore off the paper, pulled her out and gave her a big hug. He then ran off with her and came back empty handed. I later found her sat in a pair of slippers; I'm not quite sure what that means.

So that was Christmas and now we're about to enter 2008. Despite my significant fears about January and February, I do feel positive about the new year. I've spent the last several months waiting for my health to improve after a dip. Now is the time to stop waiting around and investigate whether there are different ways of going about the things I want to do. I'm sure I haven't exhausted all the possibilities just yet.

Happy New Year Everybody!

Sunday, December 23, 2007

And so this is Christmas

My Christmas Cake with a slice cut outAlmost. Look; the twenty-third of December. How did that come round so quick? Tomorrow I will be in my late-twenties as opposed to my mid-twenties, which is quite exciting. Twenty-seven has always struck me as a very sexy age to be; I'm feeling due for a prime number. Also, for most of this year I have thought I was twenty-eight for some reason, so I've unexpectedly gained a year - or two, I guess.

I haven't really stolen a slice of cake, but a certain fiendish geezer doctored my picture for blackmail purposes.

We made it to Cambridge on Thursday and had a very nice day indeed. The Sedgewick Museum was really very good. Probably the most boring place in the world if you have no interest in rocks and fossils and I think you'd probably have to apply a fair amount of imagination to enthuse a child on the matter.

Then we went to a pub called the Eagle for lunch. We went to this pub because it was one my folks had been in before, but in fact it turned out to be the pub in which Watson and Crick had got pissed every night, and whose room-swimming had revealed the anti-clockwise orientation of double helThis isn't doctored - someone had put a santa's hat on the statueix (that's not at all what it said on the plaque on the wall, but I filled in the narrative gaps). We then went to the Art Gallery, which was very nice and we finished up at the Starbucks in Borders, where Jess's husband maybe saw Stephen Hawking (I recounted this almost-anecdote at the time and everyone was very impressed). And I had Gingerbread Coffee, which is weird but very nice, and my folks bought me a book I'd wanted for ages.

So that was all very good. And whilst of course I've been knackered since, I've not entered any kind of major collapse, as I feared I might - it was easily the busiest day I've had since we moved house in February. I'm now looking forward to Christmas, which should be fairly quiet and manageable.

I hope you all have a lovely Christmas and thanks for all very much the support you have given me this year.

Tuesday, December 18, 2007

The best laid plans

So I finish all my card-writing and get them all in the post in reasonable time. Then I take one last look at the list and it occurs to me that one of my oldest and closest friends - the friend who I have more contact with than any other - is completely absent from the list. Okay. First Class Stamp for that one, I reckon...

Otherwise, I'm almost ready for Christmas. There are a few bits and pieces I'm yet to do, but it is mostly non-panicking fun stuff. Just now I am saving my energy for Thursday when I am hopefully going to have a Grand Adventure.

As a birthday present from my folks, we're going to have an adventure in Cambridge. We are going to the Sedgwick Museum of Earth Sciences. They have an iguanadon skeleton and [...] has never ever seen a dinosaur skeleton - imagine! They also have stuff like Darwin's geological writings and artifacts (although for all I know, Darwin was a crap geologist and this is just a collection of rocks labelled "grey rock", "dark grey rock", "even darker grey rock" etc.).

I like dinosaurs. They found a new species recently, which according to the illustration on the BBC News website (a) strode about with somewhat of a mince and (b) was the natural prey of the Routemaster Bus. I knew those old buses were extinct now, but I didn't realise they'd been about so long.

(Actually, when I just found that link to put in, the picture had changed to show a single-decker bus, but I promise, it had been an old-fashioned double-decker red London bus last week when the story was reported.)

The reason I'm telling you all about proposed adventure is that I'm really quite anxious I won't be well enough and it won't happen, but if I write here that it will happen, then perhaps by magic it will.

No, me neither, but it's worth a shot. I do seem to be picking up, slowly but surely.

In other news, [...] stripped the wallpaper off in the hall to find, written in big capital letters on the plaster, No sex today later. No idea what that means, especially the "later" bit, but better than finding Die die die or Accursed are all those who dwell within, I guess.

Friday, December 14, 2007

Bad Form

I'm sorry I have been so slow to reply to comments; they are always very much appreciated. Still pretty crappy, though it's coming and going. Rather preoccupied by illness nevertheless, as I so desperately want to be better for Christmas. There are several letters and e-mails I really want to write before then and that's not happening yet (one of the letters needs to get to France before Christmas, so that's getting very tight). And there are certain daily indignities which are really getting me down just now, although they are way too dull or too gruesome to talk about. In fact, even the gruesome ones are quite dull.

The other reason I am preoccupied by all things health is that I finally finished my godforsaken Disability Living Allowance forms. Bastard bastard bastard forms. Cusp recently wrote about how her saga with the Insurance Company triggered a sense of being bullied. Filling in DLA forms is not nearly as bad as that, but all this stuff - this general area of having to prove oneself to have significant impairment - presents a battering for the self-esteem.

I always advise others to accept that it isn't at all personal. These systems - insurance, benefits, financial assistance of any kind - all have to work on the basis that they won't give you the money unless their hand is forced. Every claim that can be challenged will be challenged. Even when your case is rock-solid, they have nothing to lose by turning you down in the hope that you don't have the energy to jump through the hoops of an appeals process.

I have some experience of presenting a case which cannot be refused - I don't consider myself safe, but I have enough experience to think that whatever happens, I'll get what I'm entitled to eventually. I have filled in this form on someone else's behalf, and whilst it was a bit tricky (my friend had mental health problems, which don't "fit" terribly well with the design of the form), it wasn't hard work. It was an ordeal for my friend, of course.

Doing my own, however, is deeply demoralising. For those who are fortunate enough to be completely ignorant of such things, the DLA forms require you to

(a) quantify the extent of your impairment in a ridiculously precise manner. If you have difficulty walking, for example, they want to know how far you can walk to the meter, how long it takes you (in this form, they asked this question three times rephrased), the precise angle and rate of oscillation if you have a wobble etc..

(b) explain in layperson's terms exactly why you have this difficulty. So, if you have a condition characterised by pain and fatigue, you basically have to go on about how much it hurts and how exhausted you are on every single page. At the same time, of course, you must not sound like you might be over-egging the pudding.

This is a deeply depressing process. You don't merely have to think quite hard about what your limitations are and how to phrase them, but you worry about understating or exaggerating them - which is easily done. When you can only walk a short way, that distance might easily be doubled or halved on a particularly good or bad day. But you don't really know because whilst you haven't been paying that close attention. And this applies to every practical aspect of your life.

The bitter cherry on this particular cake was right at the end when [...] wrote his little piece. They have a tiny box in which a person who knows you has to detail your "disabilities" and how they effect you. I am tempted to share with you what he wrote for your amusement, but it is also somewhat embarrassing on account of its... tragedy. Suffice to say I did suggest we replace his words with a photograph of a wide-eyed kitten with a bandaged paw. In fact, I thought about going through the whole thing and pasting in pictures of wounded animals, but I couldn't find enough animals to wound.

Saturday, December 08, 2007

Because you're worth it

My first attempt at a proper post in about a month...

This is a kind of Bare Bones of Equality post. During my recent brain-plummet I read this post at Screw Bronze! Elizabeth writes,
"Which gets me to my question, what use am I as a human being? Why should anyone come to help me eat, or help me to the bathroom, or help me to bed when I can’t move? Why should I be taken care of? What purpose do I serve in our national and social framework? The plain fact is that I am not well loved by many people: my family whether immediate or extended isn’t interested in assuming the burden. The reality is that care isn’t coming from family. So it falls to society. And I, as a rational member of society (albeit only barely rational in this level of pain) don’t see the gain."
Finding myself to be rather less active and productive than Elizabeth, I decided to climb into the compost bin so that at least my decomposing corpse could nourish the plants. Only [...] pointed out that it would take ages, it would smell really bad and in the meantime, he'd have nowhere to put the old teabags.

In any case, I do know some of the answers. Of course, what we know doesn't always hold sway over what we feel, especially when we're in great pain and/ or feeling particularly frustrated by our limitations, and I've felt, said and written this sort of thing often enough. I want to emphasise that I'm not criticising Elizabeth for writing such things. However:

The founding assertion of egalitarianism is that every human being is of equal value. From this, it follows that everyone should be given equal opportunities in life and equal respect.

Like all fundamental moral tenants this (a) demands lots of qualification and (b) goes against a small but significant part of our human nature. Naturally, I consider my friends and family much more important than anyone else in the entire world. Most of us are, to some extent, attracted to convenient groupings and hierarchies. But as with our murderous inclinations, we must not bring these feelings into the way we behave in society. We don't have to send everyone a Christmas card, but we do have to give everyone the same chances in life - and indeed for life.

In fact, the only issue about my life which can be called into question is its viability, rather than its value. There are often rumblings along the lines that disabled people can only possibly be seen as equal when a society is affluent enough to indulge us. This isn't true; our value does not change. However, if two of us catch deadly Umbungo Disease and there's only one dose of cure, then the chances are that the best possible outcome (a life saved) can be achieved by giving the dose to the other person. If I am on a sinking ship with a shortfall of life-jackets, well someone else probably has a better chance of staying alive and swimming to safety than me. Morbid, but extremely unlikely events.

Those who disagree are often drawn to even less likely Desert Island scenarios. If I am one of a party stranded on a desert island with very limited resources, then I am going to be much less useful than everyone else. I will make no contribution. Worse, I will actually take resources from other people. The best possible outcome is only achieved if I am strangled and roasted for dinner (although cook me very thoroughly or you might catch something).

In fact, perhaps I could be very useful; the first thing I could do is seize the conch and solve tricky moral dilemmas like this one, reassuring my companions that I should be kept alive - advice I'm sure they'd all appreciate. But why?

This is not about sanctity of life. Capital Punishment is an absolutely ludicrous idea in a society that can well afford to imprison people for life, but on our desert island it would be impossible to secure a person who poses a threat to the rest of us, so they'd need taking out. Their existence effectively becomes inviable.

Sleeping Beauty by Edward Burne-JonesNor is this isn't about arguing that whilst I cannot contribute physically, I may be able help put imminent starvation and death into perspective with daily poetry-readings. It doesn't matter if I can play no useful role at all. I remain of value because I am a human being. This doesn't mean that people should abandon raft-building and start constructing ramps so I can get about all over the island; even the most modern disability law, adjustment made to enable people with impairments to access the world must be qualified as reasonable given the circumstances and the resources available.

The alternative isn't a situation where we settle into some sort of "natural" hierarchy with those who are most useful at the top and those who are apparently useless being left by the wayside*. The alternative is a perpetual and bitter argument in which everyone attempts to argue for their own indispensability. Not only is the usefulness of an individual quite impossible to measure, but it is constantly changing and inextricably connected to the activities of other people.

Let's float our rudimentary raft away from that accursed island and back to the real world. In terms of contribution weighed against consumption, living in the West just now poses a small problem for everyone, and ecologically, the very richest people use the most resources. But we were talking about individuals within single societies as opposed to geopolitics, weren't we?

Let's take someone useful - a doctor, perhaps? A medical doctor is always useful, right? I wouldn't argue with that. However, even their usefulness is subject to variation. In the absence of technology, medicines and other resources, a doctor's powers to heal are very limited indeed. Then again, in a society where everyone enjoys good hygiene, nutrition, safe living and working conditions, a doctor's usefulness is somewhat less than it would be, say, in a war zone.

Also, in order to be as useful as possible, a doctor also depends on several other roles to be fulfilled. People who organise paperwork, who make appointments and so on. Nurses who perform less expert but no less essential roles (that's the theory). People who keep things clean. Then everyone who helps to provide equipment, medicine and so on and probably half a dozen other roles I haven't thought of. All very important, very useful.

So the reason doctors are so useful is that they can save lives and improve quality of life. Teachers don't directly save lives, they do the quality of life thing, but that's a little more complicated. What about lawyers? Or accountants? People who work in telesales? The prime-minister? The Beckhams?

And how do these roles - which people are paid to do - compare with those roles which people are not paid to do. How does a fire-fighter rate against an excellent parent? How many of us feel we owe our happiness, sanity or even our lives to our friends? Might it actually be the case that lots and lots of people are far more use outside of the thing they get paid for?

Nobody is without a role. Even the most severely impaired person plays some role in the lives of others; should we suppose that this is negative? That anyone truly takes more than they give? Economically, they may - I do, and because of the stage of life that I happened to get sick, I always have**. However, I do help support the existence of others; I am a patient, a client, a customer. People like me provide a convenient scapegoat The Scapegoat by William Huntfor an incompetent and corrupt government. And then there are all the other things I do for people which matter terribly to me but are kind of irrelevant, being conditional on how sick I happen to be.

Now, all this doesn't mean we don't have responsibilities towards one another, and that we shouldn't all aspire to live a virtuous life and all that. Only our value cannot be diminished by involuntary limitations on what we are able to do.

That having said, it's bloody frustrating and changing levels of dependence and loss of self-sufficiency are a rock solid git to come to terms with. So everyone is allowed to feel like a waste of space from time to time.

The other day, Fluttertongue referred back to a post she wrote about being "done to" which offers a spiritual perspective to the frustrations of inactivity and is well worth a read.

* When something is by the wayside, well surely the wayside is at the side of the way already? I lose sleep thinking about that sort of thing.

** None of us should be ashamed of this because, as I've said before, it is a universal insurance policy from which everybody has an equal right to claim should they find themselves in need. Medical, practical and financial assistance is provided for us as it would be provided for the most economically productive person should they have a nasty accident tomorrow (which might well happen). It is the (bad) luck of the draw who finds themselves in this position, however much they have paid into the system through tax. Meanwhile whilst voluntary and family carers get a very raw deal, most are making a choice; care provided by the state is unequivocally consensual and indeed, renumerating. People who do this work deserve respect and appreciation, but this is not charity.

Wednesday, December 05, 2007

Tick tock, tick tock, tick tock

Trouble is, of course, that my confidence has gone. I've had these few weeks of struggling to think, let alone to get my thoughts across to anyone else, and I've lost the confidence to write anything. I keep clicking on Comments boxes, before chickening out of whatever brief and unspectacular thing I wanted to say. It's very isolating. It's not lonely as such because here you are; I disappear for ten days and you're still here. Then there's friends' blogs and e-mails - even e-mails sent weeks ago seem fresh to me since I've been in such a fog. I feel you are there for me, but I am not there for you.

But I'm coming back, slowly. I have lots of other things to do, because I have hardly done a thing about Christmas. I'm actually quite resigned to hardly doing a thing about Christmas for the next three weeks. I have so far written two Christmas cards; I hope you're impressed!

Top priority is trying to improve my health so that I can enjoy myself and be a part of things. A part of things is something I don't feel myself to be just now.

Saturday, December 01, 2007

A piece of cake

Things got worse before they got better, but they did get better and I am feeling rather more sentient than I was. Plus I did achieve something this week so I'm going to tell you about that. It would be kind of a long story to explain why I was compelled to do so, but despite having been very unwell last weekend, I pushed myself very hard to keep this Wednesday's appointment with my Granny Kelly who had agreed to help me ice my Christmas cake. I haven't attempted anything like that since I was a child under her supervision and I didn't have the faintest idea where to start.

A Christmas Cake decorated with poinsettias and hollyAnd look what we did! I have no idea how impressive this cake may look to others, but I am very pleased with it. I suppose I am particularly chuffed because before hand, even after the marzipanning (which my Mum helped me with some weeks ago), it was extremely lumpy and misshapen. Now it looks quite orderly.

In other news, there is no other news as I really haven't been doing anything else.

Do you think anyone would notice when I bring it out at Christmas if I'd pinched a slice in the meantime?