Lost among the subway crowds, I try to catch your eye

Yesterday we went to London! It was very exciting. Since I was last in our nation's Capital they have built an enormous whirly-gig called the London Eye, the Millennium Bridge and a great glass Gherkin, hopefully part of a growing trend to promote healthy-eating through architecture.

I had been invited to a party that we didn't expect to be able to attend before my folks very generously volunteered give us a lift in. [...] was concerned that they would have nothing to do while we were at this party.

"It is a Sunday," he said, "It's not as if any of the shops or tourist attractions will be open."

He was rather shocked at the scenes in Oxford Street and Regents Street on the way home. To be honest, I was rather shocked as soon as we got into London at the sheer volume of people, I mean so many people. I saw more faces in one day yesterday than I have seen in the last five years put together. Also, there was a strong sense that most of the buildings in central London have been built for people three feet taller than me. Everything is so grand and so very big. But the Christmas Lights were fantastic and London does have a certain romance.

We had a great time, it was the busiest day in absolutely ages and we met some lovely people. Today I shall sleep.

Just a little reminder that today is the deadline for submitting any posts to the 4th Disability Carnival, which I will post here on Thursday.

The rain falls down on a humdrum town

I am still having a lovely time in Suffolk. A very busy time; the busiest time in terms of doing stuff I have had in years. I am being good though. Honest.

Today we visited Ipswich, the town where I was born and brung up. It rained very heavily. It is very strange that I don't feel so much as a twinge of sentimentality about the place, because I didn't really hate it. It is just that there's nothing really to say about it. Not a bad place by any means, but it is not a place with great character. Of course, I was the kind of young person who would have aspired to get out of any place she had been brought up in.

Anyway, we took my two Grannies out for a meal, which was nice. I chose Whitby Scampi from the menu, as I was feeling rather homesick. Both the Grannies were in good spirits. My maternal Gran has just had yet another grandchild, (my second cousin, I guess) but whose name she had forgotten.

"It's James," I said, "like Granddad."

"Oh yes," she said, "You know, I never knew his name was James until he died."

"What?"

"No, I thought his name was Harry."

"But what about when you got married?"

"I wasn't paying much attention to be honest."

My Granddad was known as Harry. My Grandad Kelly was known as Desmond and his true first name was John. My Granny is known as Audrey but her real first name is Alice. You will therefore understand why an imaginative child grew up thinking that her family were either involved in the Criminal Underworld or the Intelligence Services. All thoses aliases. And no Internet.

In other news, Lady Bracknell's Editor, MBE, will have had her Investiture today at Buckingham Palace. And An Unreliable Witness has arrived home after five months and five days in hospital. Hooray!

Illness Beliefs, Impairment, Empowerment and Guilt

I wanted to write about Illness Beliefs. This is the belief system a person develops to understand any given illness, why they are ill and what they might do to get better. For example, by the time we reach adulthood most of us will have an idea about what the common cold is and what impact our behaviour will have on any cold we might catch. We know it is an infectious condition, but not a serious one. We know that there’s no medication that can cure it, but it will be over shortly and there are a few things we can do to reduce the impact of symptoms; rest, eucalyptus, lemon, honey, camomile, Scotch etc.

Chronic illness is far more complicated. Its effects are far more dramatic but the long-term nature of the thing means that we have far more power over what happens to us. The ups and downs can be affected by the way we manage our diet, activity, adherence to treatment regimes and how we respond to relapses and remissions. And how we behave is determined by our illness beliefs; our understanding of how our condition works, how we got ill and the powers we have over our prognosis.

The reason I wanted to write about this is the way I have been thinking about recent improvements in my health and the way that my attitude has changed as a result. There is no doubt in my mind that illness beliefs can be very important; attitude can be either highly beneficial or highly detrimental, but analysis of them and their role is very very difficult.

It is a problem endlessly discussed in medicine; for example, some people respond to chronic illness or injury by retreating from, rather than altering, activities. This can do a lot of harm; people may step back from work, social activity, physical exercise and treatment regimes, resulting in a deterioration of both physical and mental health.

However, it is impossible to determine to what degree avoidance is perfectly sensible; at the very least, an ill person generally needs to reduce activity from normal levels before the symptoms of illness will do it for them. If a person is stable at the level of activity they partake in, this may mean that they are failing to push themselves, or it may mean that this individual has found the optimum balance. It is hard enough for us to consider these questions, let alone people on the outside. Wheelchair Dancer wrote something about this last month.

Another issue is that experience and belief are intrinsically linked. I have seen a number of formal clinical studies about different conditions, concluding that attitude effects prognosis, since people who were more severely ill tended to be more pessimistic about their health. But correlation and causation are not the same thing; the way such data is usually collected, it could just as easily be that greater severity of illness brings about increased pessimism.

This bears out in my own recent experience; just now I am very much more optimistic about my health - including the power I have to effect change in my health - than this time last year when I was heading steadily downhill.

But perhaps most importantly, the only unhelpful illness beliefs that are ever discussed by the medical community are those where a sick person feels they have less control than they really do. That a patient has the wrong attitude is the ultimate get-out clause for any frustrated physician, therapist or even the researcher whose hypothesis failed. Personally, I have always been very fortunate with doctors and the like, but I have still reached a position where I have felt wholly responsible for my health and as such, pretty wretched about the state I have managed to get myself into.

A recent post by Ballastexistenz really caused me to examine this closely, because I have always thought this stuff limited to chronic illness with the potential for remission or the sort of injury which may be followed by some degree of rehabilitation.

Ballastexistenz describes thought processes very close to my own, but she is not sick, she has autism. Autism is neurodevelopmental; as I understand it, her attitude and that of those around her may impact on the level of disability she experiences, but cannot possibly effect functional impairment (apologies for discussing you in the third person, should you be reading this).

And yet what she described was so very familiar that it had me in tears. I guess a lot that I wrote about loci of control relates to the way my own mind works at times, but the fact someone with autism felt this way made me just how ridiculous these ideas are. Because impairment is to do with a random event or series of events; people may make themselves more or less vulnerable to acquiring impairment or having disabled children, but nobody is immune. And most of the factors effecting the degree to which we are impaired are simply down to luck.

Unfortunately, in my case, I know there are things I can do which might effect my level of impairment. I know I have effectively brought about relapse by running myself into the ground, and contributed to a degree of remission through being careful, pacing, exercise and so on. Plenty of random events in the mix as well, but that's besides the point. In one sense, I dearly wish I had no choices, to know that every little push is a gamble. I could get used to the one stable level of health; I would know what I had to work with all the time.

In another sense, it is very empowering to feel that the choices I make can have a positive, as well as a preventative effect on my health. I can't help feeling slightly smug about the fact I'm doing better and my muscles are getting stronger just now.

Hmm. Not really sure what my point was, but I wanted to get some of this out of my head. Everything is still going well in Suffolk...

Materteral Mishaps and Laboured Linguistics

We had a very good weekend, much better than anticipated. We went out for a lovely meal with the aged Ps, R, A & A to celebrate our anniversary. A good time was had by all. Alexander was very sweet, but he did throw a showbiz tantrum on Saturday afternoon and I couldn't be in the same room as him, the racket he made. Something to do with teeth coming through, being somewhat overtired and having a cold, he said, but I think he simply had to be centre of attention.

He does however think it is very funny when someone sticks their tongue out at him. He smiles, giggles and then tries to do it himself - which he can just about manage. This is fascinating to me; he is way too young to have a sense of humour or to realise that someone is pulling a silly face. And he doesn't immitate other expressions. In fact, he appears to be working very hard to focus on a person's face at all.

Alexander met Kettle the pirate for the first time and was very impressed by him. He smiled a lot and gave him a friendly punch in the chest several times, which I interpreted to be a gesture of approval. He demonstrated his thanks to me by attempting to vomit over my shoulder, rather than to vomit straight onto my lovely clean top. Unfortunately, he missed.

Materteral, by the way, is like the feminine of avuncular; i.e. aunt-like. I am not sure whether we should stick to masculine familial terms since they have now almost lost their gender; paternal, fraternal, avuncular etc. Avuncular isn't exactly used everyday; I didn't know what it meant the first time a much older male friend declared he had very strong avuncular feelings towards me. I was quite worried for a moment.

To be an aunt is a very important role. And indeed, there is a feeling we have towards our friends sometimes which is a little bit protective, and encompasses a desire to give guidance and help but doesn't involve the sort of protectiveness and angst which one might describe as being maternal.

However, is there anything particularly different about being an aunt as opposed to an uncle? I can't imagine so. So perhaps we should stick with avuncular to described the relationship between the siblings of parents and their nieces and nephews? Is accepting the masculine as default a slight on the feminine or merely the most sensible way to do away with gendered language altogether?

Some feminists have attempted to reclaim the word patriarchy, referred to as The Patriarchy to mean "our society which is run by men in the interests of men; a sexist society", but then that leaves us without a word to describe a "a society run by one group of people who maintain an unnecessarily level of control over others, mirroring a parent-child relationship" (and the various other meanings which don't hinge on gender). It also draws attention to the presence of gender in patron, patronise, patriot and various other words which we don't have neutral alternatives to. Whilst language is important, you'd have to rewrite the whole thing (and abandon the Romance languages altogether) if you wanted to take all references to gender literally.

However, as an aunt I have struggled to find good cultural role models. Lots of our stories have positive representations of the uncle. The kind uncle who take his nieces and nephews under his wing, the eccentric uncle who entertains the children, the uncle who become substitute fathers, the man called "uncle" who turns out to be the mother's lover or even the child's father. But aunts? I can think of a few nasty aunts who bullied mothers or exploited their orphan nieces and nephews, but no particularly good ones.

So in a sense, I would like to promote the role of the aunt, to promote materteral pride. A lot more women are able to chose not to have children these days, but that doesn't mean that we don't want anything to do with children, that we don't have a special contribution to make (or indeed that we are secretly frustrated by our childlessness and pose any competition to the parents). Nor should all relationships that women have be restricted to being described as either romantic or maternal. My materteral role is very important to me, and I have strong sororal feelings towards my closest friends.

Then again, maybe there is something to be said for being easily understood...

The 4th Disability Carnival is Coming Soon.

David at Growing Up With A Disabilty did a sterling job hosting the 3rd Disability Blog Carnival yesterday. The next one will be here, at Diary of a Goldfish, on Thursday 23rd November. You can make submissions for it (by Monday 20th, please) here or by e-mailing me.

The theme for this Carnival will be Different Ways of Going About Things. As always, any disability-related blog posts are welcome, but I am particularly interested in the ways in which people are able to the things they want to do by some method other than the usual methods which are frequently barred to us for one reason or another.

This could anything from how you use equipment or a neat way you have devised to manage something you wouldn't otherwise be able to do, right through to the ways in which, because of impairment, you have found a completely different way of looking at your life, what you want to do with it and how that might be achieved.

We are used to hearing a lot about what we can't do, the way in which impairments stop us doing very much of what is considered to be normal. But is there only one way of going about any given task? Are the expectations of a normal life all that they are made out to be? And might there be some richer adventure to be had along the road less travelled?

Suffolk

We had a lovely journey down to Suffolk; the light was absolutely gorgeous and even the concrete bridges looked nice. We also found the wormhole that allowed the journey to be achieved in just four hours. And we're going to see Alexander later on today. Hooray!

The Goldfish Guide to remembering your PIN

I recently got the PIN sorted out on my credit card; in the UK we have needed a Personal Identification Number to use a debit or credit card since February this year, but of course I haven’t bought anything in a real shop since then. I was thinking about this and my cognitive dysfunction and thought I would share my thoughts in case it might be useful to anyone else.

I should explain that there is very little information which I know at all times without having to think about it. For example, the way I remember my name is to picture the top left-hand corner of a sheet of lined A4 paper. The very first thing I think to do when presented with a sheet of paper is to write my name on it – something I would have been doing several times a day throughout my school career. I consider what it is I need to write in that corner and I remember what I am called. Which only takes a brief moment.

So obviously, I can't just glance at the PIN the bank sent me and hope to remember it next time I'm in a shop. But I've never had any problem with the PIN I use to get cash from the machine.

First off, you are much more likely to remember a PIN when you have chosen it yourself; if you have memory issues or dyslexia, there's probably not much point in trying to memorise whatever random numbers you were initially sent by the bank. Phone them up and pick your own number.

Some people have numbers they learnt as children which have no relevance today, but stick in the mind very easily; your parents' Co-Op number for example, or part of your first phone-number.

Failing that, the simplest method is to pick a significant year in the second millennium AD; 1066, 1492, 1603, 1812, 1984 etc. I imagine the bank would advise against using the year of your birth, marriage etc..

1812 and 1984 are particularly good because, in my mind at least, each is associated with a historic event, a book (War and Peace and 1984) and most crucially, a memorable piece of music (Tchaikovsky’s 1812 Overture and David Bowie’s 1984). And yet others are unlikely to guess this, unless those dates have any particular personal significance.

The other, less easy, but more secure method is to chose a sequence of numbers which represent some simple maths like 3721 (3 x 7 = 21). Similarly 9218, 6488, 6713 and so on. This gives you something more to work with than just four random numbers, and if you forget one you can still work it out. For example, if all I can remember is 369_. Well, I know that three and six can’t be made into anything with a 9 in that position and I don’t have enough room for the 12 which would be the next number in that sequence. Thus, it must represent 36 and 9 and the only sum I’ve got room for is 36 / 9 = 4, so 3694.

For extra measure, do write it down, as part of a made-up phone number in an address book, or as a pretend price for something you have taken a note of. But make sure it isn’t too prominent or obvious wherever it is.