Aaaagh!!!!

I was trying to write a post this evening, but instead I am going to do a little scream. Don't worry, there is nothing of great note to scream about.

Aaaagh!!!

There's a Peanuts cartoon where Linus says, "No problem is so big or so complicated that it can't be run away from." (It's about two thirds of the way through A kiss on the nose turns anger aside if you're interested. In fact, I think Richard Bach misquoted it in Illusions - put it down to Charlie Brown, but it was definitely Linus, I am looking at it right now).

Charlie Brown says, "What if everyone was like you? What if we all ran away from our problems? Huh? What then? What if everyone in the whole world suddenly decided to run away from his problems?" (over three frames, you understand).

"Well," says Linus, "at least we'd all be running in the same direction!"

Today, I am with Linus. I'm outta here.

Timewasting Links

Via The Wepben Blog check out Dictionaraoke; 100 songs as sung by pronunciation tools.

Somebody has had a lot of time on their hands. My personal favourite was Depeche Mode's Enjoy the Silence, but then that is one of my favourite songs of all time anyway. The best one that everyone knows was probably Anarchy in the UK.

Via Fetch Me My Axe, check out The Angry White Boy Polka (although persons with more refined musical taste are unlikely to know any of the performers there satirised).

Finally, try your hand at forging a Jackson Pollock - may not be as hard as you always imagined. That was a random find.

If you notice anything odd happening to my fonts, this is because I have been reading a book all about CSS (uh... Cascading Style Sheets) and now think I can transform my template without any glitches. All digits crossed.

The dish ran away with the spoon

Ballastexistenz wrote this excellent expansion on Spoon Theory. If you’re not aware of what Spoon Theory is, the original can be found here (see also Beer Theory). Spoon Theory is basically the idea that those of us with limited energy have so many spoons we can use every day, and every single activity uses up so many spoons. The things which other people take for granted like getting dressed or washed or making a snack all use up spoons. And once you have run out, you have run out, so life with these sorts of impairments necessitates careful planning and a constant reassessment of activity and energy levels.

Do go read what Ballastexistenz wrote about it. Perhaps the most interesting thing I found in reading this piece was the amount of empathy I had for Ballastexistenz’s experience as an autistic person, struggling with her interactions with other people.

I am not autistic, but I believe that dealing with other people is, without a doubt, the most exhausting thing that all of us are obliged to do on a regular basis. A friend of mine is severely affected with my condition and at one point, was trying to build up her mental stamina. She did this by having a family member come into her bedroom, sit down and remain in the room, in silence, for fifteen minutes at a time. When I first heard this I was a little baffled. How can the mere presence of another human being - especially one you know well - test your stamina?

Fortunately, I have never been that sick. And it wasn't really until I read Ballastexistenz's post that it made complete sense. My friend (so far as I know) isn't autistic either, but as soon as another human being enters the room, there is mental activity taking place. For myself and most other people, this activity is too slight to pose any sort of challenge.

Please note, I'm not comparing one sort of condition with another, I'm not saying, when we're really exhausted, we're all a little bit autistic or any such nonsense, only that these particular issues can be similarly challenging to different people for very different reasons.

Another comment I heard recently from a person with my condition was, "I always know when someone has the Dreaded Lurgy - you can tell just by looking at them. You can tell if they have been misdiagnosed, as well. It's a certain expression, a glazed look; folks with the Dreaded Lurgy don't ever make eye-contact with you."

Now I had to disagree because I do make eye-contact with people. But I am conscious of this fact because it is often quite an effort. And it is very difficult to maintain eye contact at the same time as speaking or listening. For a long time, I thought this was just me, because I don't get a whole heap of practice; I haven't been required to make eye-contact with anyone other than [...] in the last ...four weeks, because I haven't seen anyone else.

But reading Ballexistenz's post and thinking of discussions I have had with other people who have conditions characterised by fatigue, I begin to think that perhaps a lot of problems that I have put down to inexperience, ineptitude and misanthropy may be more to do with the challenges of limited energy.

In psychometric tests, I usually land just left of the middle on the introversion-extroversion spectrum; I am quite happy in my own company, but I am really very interested in people. In truth, much of the time by myself I spend thinking about other people; the people I care about, social and political issues or else the characters in my book.

However, the more tired I am, the more introverted my behaviour, the more social niceties (for lack of a better phrase) become a tremendous effort.

For example, my parents have been decorating their living room. This has been a big task because they opened out the structural fireplace (they thought it was an inglenook; it wasn't, but it has that effect). There was also a long saga involving which particular shade of yellow they were going to paint the walls with - you know the sort of thing.

Now I know how to have these conversations. For my Mum, it is news and it is my job to receive this news with interest. When I am less tired, this is no problem whatsoever:

"We've changed our mind about the paint again," Mum says.

"Oh really?"

"Yes, we've decided to go for a sunshine yellow as opposed to a canary yellow."

"Oh right, because I did think that the canary yellow might turn out to be a bit too yellow."

"That's right, it was. We had opened one of the paint tins but they shop will exchange the others."

"Well that's good."

and so on. This is no problem; I'm not especially interested, but I don't find it boring or tedious or difficult in anyway. This is a normal 'healthy' conversation. Another person would be better at it than I; for example, my sister is quite interested in the subject of paint, so would probably have more insightful comments to offer.

When I am more tired, it is far more difficult. The conversation goes:

"We've changed our mind about the paint again."

Complete silence from my end. I really can't think what to say. What am I being asked to say? I am entirely indifferent to this news. What am I supposed to feel about this change of heart?

"Are you still there?" Mum asks.

"Yes."

"We've decided to go for a sunshine yellow as opposed to a canary yellow."

Complete silence again. I'm preoccupied by what difference there might possibly be between these two colours.

"Are you all right?" Mum asks. "I'm not boring you am I?"

And I'm never so tired to forget the Golden Rule; do not allow your mother to think you are bored. Apart from anything else, it's not boredom. It is the lack of an opinion combined with the fatigue-induced inability to... bullshit would be too strong a verb. I suppose it is a fatigue-induced inability to be nice.

All this can make me seem rather anti-social. I am not naturally good at small talk, but in this state I resent people talking to me about nothing because I am having to work so hard to process their nothingness. I become very discriminating about those individuals upon whom I choose to spend my energy.

This is something which is met with very little understanding, because it is universally acknowledged that social activity, spending time with other people, meeting new people is good for you. And it is, it really is - I often long to be around other people. Only, I think it would help to acknowledge the fact that it is also very costly; in far more ways that the practical effort of getting somewhere and staying upright for the duration.

Anyway, I am rambling a bit (and running out of spoons) but I wanted to post something on this while Ballastexistenz's post was still fresh.

I was feeling kind of seasick

The nausea is not psychosomatic; it has been getting gradually worse all week. I guess it must be the Ibuprofen eating away my insides again so I have tried to cut down and made a doctor's appointment. At least this time I have a good idea what's going on; last time this happened, it coincided with menstrual mayhem and I thought I might be pregnant.

The nausea rendered me incapable of picking up the slug I found in the kitchen last night. I hoped it was dead and, since I thought I would throw up if I touched it, I decided to leave it and deal with it in the morning. This morning it was gone. I feel extremely pathetic about this; that and the spider.

In other news, I was looking for a document of novel notes this morning and having forgotten its title I searched my computer for Word documents containing the word stomach - thinking that there would only be one; I can't think of stomachs coming up in very much of anything I have written. There are 43 Word documents on my computer containing the word stomach. 43. This fact also made me want to throw up.

I have written way too many words and they're almost all complete and utter nonsense. I think my laptop's recent problems may be due to the machine spontaneously evolving some sort of digital version of consciousness, developing aesthetic taste and then deciding its life wasn't worth living.

Blackcurrant-liquorices. That is the most effective treatment for nausea I have come up with. The doctor will give me pills that do the job properly, but if anyone has any tips to survive until then, would be most appreciated.

London Calling

Today is the first anniversary of the 7th July attacks in London.

I pointed to it at the time, but James Medhurst gave a powerful account of trying to get to work that day. Vaughan was articulate as ever and later got stuck on the Tube outside Stockwell Station, where Jean Charles de Menzes was mistaken for a suicide bomber and shot dead. Damon blogged as the news began to come in and described his experiences travelling by Tube in the subsequent weeks.

Since I have nothing useful to say on the subject and didn't really at the time, I shall direct you to this, probably one of my most sombre and reasoned responses to world events. Or perhaps not.

Loaded with Beautiful Vulnerability

This blog entry contains some strong sexual references. I promise after this I will try not to write anything of a sexual nature for at least the rest of the month. Honestly, I’m not obsessed. The orchids have nothing to do with anything; I just thought the text needed breaking up.

Wheelchair Dancer has been discussing disability-fetishism following the news that Encarna Conde, a wheelchair user and disability campaigner, has starred in a pornographic movie entitled Breaking Barriers. Wheelchair Dancer's first post on the subject is here, her second here. Blue at The Gimp Parade has also posted about disabled people in porn. These discussions throw up a great number of issues, but I wanted to write a bit about the sexual practice of pretending and what this says about our culture’s deep-seated attitudes towards disability.

Please note, I do not wish to criticise other people’s kinks, at all; I don’t think people really choose what turns them on and certainly folks ought not to feel ashamed of thoughts and practices which harm no-one. But like many aspects of our sexual make-up there are cultural influences on these things which are interesting and which can have an effect the rest of us.

I am aware that often people are excited by the mere existence of a taboo; in a culture where disability paraphernalia is generally symbols of weakness and indignity, perhaps their is some perverse thrill from, for example, having sex in a wheelchair.

Another thing going on is perhaps partly physiological. We know that stopping the body doing what it wants to do, whether through conscious effort or some practical restraint increases physical tension and can both intensify and prolong events. A nature example of this is that some men with certain spinal injuries cannot ejaculate fully, and so experience multiple-orgasms by default.

A quick glance in the window of any Adult emporium suggests that folks have many different ways of going about this sort of thing; some with pink fluffy handcuffs, others with really rather sinister looking equipment. Maybe for some people, it is more comfortable to sit in a wheelchair and pretend your legs are paralysed than to be tied up (or whatever else).

Physical restriction also negates performance anxiety, thus reducing inhibition. Some people are loaded with guilt or nerves and like to be lead or looked after. Other people are the other way inclined; whilst I believe that very few people wish to dominate their lovers, some people like to maintain control, to do the giving, as it were.

Now, disability ought not to have anything to do with this. But folks do dress up in all sorts of daft costumes in order to symbolise a certain power dynamic, all based on some exaggerated and highly-sexualised cultural stereotype; the nurse, the fireman, the french-maid, the police officer etc, each symbolising a specific role. The disabled person is just another (if far more obscure) concept – apparently a passive and helpless one. And as Wheelchair Dancer says, there’s nothing wrong with sexual passivity per se; the association is ...discomforting.

But again, I don’t think this does us a great deal of harm; as disabled people, we are not obliged to conform with this and people who do are just playing a private game which works for them. What's more, I don’t think this is born out of an idea relating specifically to our sex lives, but merely our overall role in society. And that is the problem; not the fact that people take these ideas into the bedroom.

It is also the far more interesting bit. In particular, a visible non-subjective symbol of impairment legitimises all sorts of psychological and social concessions in the wider world. From the little reading I have done, the most appealing impairments seem to be amputation and paralysis; these are things that everyone recognises, understands and that are entirely immovable; you don't have good days and bad days and nothing is likely to change.

My own experience is that coping with physical fragility and pain without the obvious and undisputed symbolism of a wheelchair or walking stick is extreme hard work. People walk into you and lose patience if you are slow or disorientated; strangers have high expectations of you and you find yourself destined to disappoint and baffle them.

Okay, so personally I would much prefer pain-free bipedal mobility and perhaps most significantly, I dislike the attention I attract as a wheelchair-user; I don’t like being fussed over or looked after and I would very much like the option of blending into the background. However, this kind of attention, sympathy and gentle-handling may well be appealing to some, even those whose fragility and pain is on a purely emotional level.

In this society, we’re not very kind to one another and unless you have a sign tattooed to your forehead reading PLEASE BE GENTLE WITH ME, folks will assume that you are just as strong, confident and capable as they are. Sit in a wheelchair and generally (though not universally) people will be kinder to you, more likely to speak to you and ask if there is anything they can do to help.

But, nobody should need to be in a wheelchair in order to be treated with respect and uh… tenderness isn’t exactly the right word, but I think you know what I am getting at. If we all recognised one another’s needs and vulnerabilities, then perhaps the need would pretend would cease?

At the same time, wheelchairs users, and other people with visible impairments should not be seen as necessarily vulnerable and passive. Apart from anything else, some of us are complete gits.

Hmm, all about the houses on this one. Hope it makes at least some sense.

Paranoid Android

Last week I realised I was beginning to slip into paranoia. This week I read that one in three people in the UK regularly experience paranoid thoughts. This is nonsense.

They offer an example of a paranoid thought:

Greg, 19, student: "If I'm with a friend and someone rings them on their mobile and they tell the caller they're with me, well if the caller then says something I can't hear and the friend I'm with laughs, I always think that the person on the other end of the phone said something horrible about me."

Well, duh. Of course you do. If they laughed and didn’t go on to explain why they had laughed, they positively invited you to think that. Whether or not something horrible was being said about you, your friend has appalling manners and should be abandoned.

We are all concerned about what other people think of us and we know that other people talk about us because we talk about other people. We are social animals; we confuse and fascinate one another. What people say about us behind our backs has to remain a mystery and the possibility that we are being laughed cannot ever be ruled out. We all know this, we all suspect this under certain circumstances and, in the above example, this is a fairly rational hypothesis. Of course, some people will care much more than others, but it wouldn't make them paranoid

Paranoia is defined as a delusional way of thinking; para meaning beyond (noos: mind). Granted, we all use this word to apply to fairly minor niggles, just as we say we feel depressed because it is raining or that it has been manic in the supermarket. However, whilst psychologists need to make a living, using this word to refer to ordinary thought patterns, thus pathologising the entire human race, is somewhat irresponsible.

Crucially, it means that when people are in serious trouble, other people are less likely to understand or appreciate the seriousness of the situation. Plus it supports the idea that all mental distress is an illness which needs to be (and can be) addressed and cured. Mental distress is part of the human situation.

Now I am not a socially confident person at all. Much of the time, I get really very worried about causing offence to people or making people feel uncomfortable in some way shape or form. This is notparanoia; this is low confidence and general social ineptitude – mostly but not entirely the result of chronic illness and the resulting isolation and inexperience. My experiences don't even stretch as far as Social Anxiety Disorder; they don't stop me doing stuff or engaging with other people.

The week before last, one event caused me to feel insecure about other people I care about. This was not paranoia either; that was a fairly normal reaction to a distressing and surprising event. But last week it took on a different shape, I was without my laptop and so with far fewer distractions to take me out of myself and it got very silly, to the point that I was feeling extremely nauseous (which I assume to be psychosomatic as it has since gone away) and becoming somewhat preoccupied with bad thoughts.

It was only a couple of bad days. I have a disease of the nervous system and this boat doesn't take much to rock it. Brief spells of this kind of thing do not qualify me as having a mental illness, but I would use the word paranoia to describe this sort of thing. These sort of experiences I have had myself would include being close to certain that:

• Something I have said or done in innocence has caused major upset to someone even though there is no reason to suggest this person is upset.
  

• People are going to find out, or have already found out, about personal and private things in my life - usually things I would be deeply ashamed about.
  

• Something I have said or done has lead or will lead directly to something very bad happening to someone I care about. It was about that level last week.

• I have supernatural powers which make bad things happen to other people, or bring about major disasters in the world.

• My thoughts are leaking out of my head for all to see.

I could be more specific, but it would be mortifying. It sounds crazy, but it is. That’s the point. These kind of thoughts are evidence for my having been somewhat unhinged at the time. Fortunately, in my case, like hallucinations and other weird experiences, my equilibrium is rather fragile, but quickly re-establishes itself.

The most extreme example of paranoia I came across in someone else was when I visited my friend, who has Borderline Personality Disorder, after the Soham murder victims had disappeared. Events in Soham had happened to coincide with a bad spell for him. This was before we knew for certain these two little girls were dead, and their faces were on the news all day and on the front of every newspaper.

My friend is not sexually attracted to children and anyway, he is gay. He wouldn’t hurt a fly, lives the other end of the country from Soham and has no independent transport. And yet he said to me; “What if I killed those little girls? What if I did it for some reason or other, but have blocked out the memory?”

That is paranoia. I remember it well because I was stunned. However, part of the problem with such thoughts is they are so scary you keep them to yourself. Once my friend had said this out loud and we had gone through all the ways in which it was absolutely impossible, he was laughing at the silliness of the idea.

Uh, I am about to be kicked off the computer so no time to round up with any sort of conclusion.