War on Terror

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So, my own war on personal terror finally started two days ago – and this one isn’t phony. I really do have evidence of Weapons of Mass Destruction inside me: a descent from the milder forms of ME/CFS for 12 years into (now) complete bed-boundness over 9 months; permanent unilateral inner ear hearing loss; gastric disorders I never dreamed could hit me so hard; seemingly complete loss of restful (delta? stage four?) sleep; and the loss of 6 stone in weight (84 pounds, 38 kg) since October. I imagine teams of little white-coated UN inspectors inside my gut ticking their clipboards, packing their bags and getting their hats: “Yep, OK. This time there’s evidence”. Not so much a smoking gun as repeated chemical attacks: enough to take some kind of action, surely?

My NHS doctor’s reaction over the phone? “Well, if you’re too ill to come in, what’s the point in me booking you an appointment with a GI specialist?”. It’s a very strange thing to be able to hear a shrug over the phone.

When you’re well, you don’t imagine, particularly in the UK, that if you got this ill doctors wouldn’t rally to find out what to do, try things, do a little more than a few standard tests and say “nope, you’re not going to die” and send you home. You imagine broken legs, and “Carry on Doctor”, or high temperatures and stethoscopes; or if you’re morbid you think of those cardiac arrest doodahs and beeping monitors. But nope: suddenly losing 6 stone in 9 months or permanent cochlear damage doesn’t seem to perturb doctors in the UK, if somewhere on your medical record the words “chronic fatigue” appear. It’s like having the Joker in card games: because it can stand for anything, it belongs nowhere; when symptoms are mild, it can be classed as “possibly psychosomatic” in hushed tones; when suddenly dramatic, their undefined class of illness “CFS” can be used to account for every symptom with a sympathetic shake of the head and “what can you do?” look.

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I’ll try to leave the rest of that anger behind now, as the point of this entry wasn’t that: it was to try and use a possibly brief spurt of energy to say something about where I am physically. This is entirely selfish, as I’m so exhausted I’m finding email correspondence extremely hard work, and I can always point you here instead can’t I? I know it’s going to seem terribly rude when I do, but needs must.

Just before I dive in, I want to say something on behalf of me and all those with chronic disease: how unfair it is that we, unlike others, have to fill our weblogs with entries like this. They’re interminably boring to the well, and we know it. It’s unjust that we don’t have parties, and drunken yachting incidents to blog about. We don’t do it because we’re obsessed with our illnesses – we find them as boring as you when we get a little better. We do it because this is our lives when things are really tough, and we’ve found succour from others whose lives are flat-ironed by the same experiences. We do it because we’ve found information in similar articles that has helped us, we do it because we just want it said out loud. The rest of this entry will have little interest for the average reader, so I’ll draw a curtain around it for you to skip if you need to. But you’ll miss my terribly deep insight into the human psyche at the end if you do.

This is already feeling barely coherent, so please stick with me if you want to ask “how are you?” (kind people). Here’s an answer.

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Always cry at endings

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Liz’s funeral was yesterday in London, which it was impossible for me to attend – I can barely get up for 30 minutes’ activity at the moment without a relapse for several days. It would have of course been traumatic to go, but I found myself sitting at home all day, watching the clock, wondering what was happening now, who was there, what was being said – a feeling of permanently being on edge along with the sadness of it all – which continued into the night. And the horror of watching the news on that very same day, as the police shot someone on the underground, surrounded houses, sent in sniffer dogs – the very same events continuing as people gathered for Liz. Somehow, not being there has left a big hole, an uncertainty that I don’t know how to fill, an ellipsis without a following sentence.

I found myself going back to the music that brought us together, music that I haven’t listened to for years, that became some sort of phobia for me. For 8 years I was part of, and responsible for a large community of people that seemed very special – that formed so many relationships and friendships, marriages too, that I couldn’t count them. It’s where I and so many others met Liz. I’m still there, but it’s quieter these days, and most of the original people have moved on for understandable reasons. But the music it was based around seemed to have some unearthly life-changing property in the early days, and an indefinable ability to sniff out the nicest, most unusual people and put them in touch. A little secret gentle spider’s web around the world that’s still there, but lives on in other places now, often in pubs, and happy households for those brought together.

For me, it all got too much a few years ago: being seen as so central to the community but actually doing nothing cleverer or more profound that some organising and gentle cajoling made it too important to me, and too scary because of who I was not. That the rising tension of my illness gathering pace coupled with the disparity between my public face and internal gender conflict (I was too chicken to just come out and say it to more than a few) came to a kind of quiet crisis in about 2001, and I largely disappeared visibly, while continuing to work the levers in the background to let it continue. Along with this, the association of the music itself and this hurt became very strong and I stopped listening. I’m not even sure if Liz still listened to them much these days, but yesterday for some reason, sitting in my bed, I felt a strong need to revisit and listen – maybe just to feel closer to her and those in London, standing, singing, listening, crying. It wasn’t fun, but I suppose maybe it gave me something to do, a conduit for expression, from my own bedroom.

In the evening of course, I exploded into anxiety land, and fell to pieces shamefully seemingly over my own worries, and as usual, unable to identify a single cause: an ant-hill of individual causes become a single organism of toppling guilt and fear. I’m scared and so sorry for Liz; I’m scared for myself about the anti-parasite drugs I’m about to embark on; I’m scared I’ll never be able to go to London, or a shop again. I think I just wanted to be there.

The loss of others is supposed to make you reflect on what you have. But all I could think, and couldn’t say was “if it had to be Liz, why couldn’t it have been me instead?”. Stupid, self-indulgent guilt? I just can’t explain it. It just seems to me she had such wonderful enthusiam, health, passion, and was doing so much, seeing so many, making so many happy. I have the resolve to do little or none of these and if (if) my life is going to stay more like this than that, then it would make more sense for it to have been me: to keep Liz in the world, where she can make cakes, punch arms and delight a thousand people. I can maybe touch 3 or 4 weekly, and a dozen at tops in a year, and I have little to offer them back now but fear and worry, which isn’t a patch on getting drunk with them and giggling over a cocktail.

It’s not fair of me to end this like this: a few people were incredibly kind about me being represented at Liz’s passing, and one in particular. We don’t know each other so well, yet he took the time to encourage me via email to say something via proxy, be represented, represent the community where we all met in some way. I wouldn’t have had the composure to do this myself, and I’m told something I emailed was read out. I was very anxious it was an imposition – so many others will be hurting more than me – but he encouraged me to do so. He even suggested I chose a flower and bought it for me. I know little else of what happened yesterday – I hope I get to find out who said what some time, as it feels tense as a coiled spring not knowing, somehow, even though it won’t change anything. But I’m so grateful of the care and understanding shown by another for what I could and couldn’t do yesterday.

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I’ll leave this with the another quote Liz left us in an email, the one I chose to be read out yesterday. It’s from George Santayana, American philospher from the early part of the last century. His most famouse quote is “Those who cannot remember the past, are condemned to repeat it”, which seems relevant to the idiocy our own states are pursuing currently that connects us up to the tragedies of today, but this isn’t that. This is a lesson about individual fear, and hope.

It’s an incredibly hard lesson, and one I know the least about: learning to love and not fear change, even if it seems for the worst at the time. It comes very close to the lessons about Tao I’m trying again to understand: that the only way out is to let time have its course, be alert, but rest. I can’t say I’m anywhere near it, but here it is.

It is better to be interested in the changing seasons
than to be hopelessly in love with Spring.
- George Santayana

Stay in the present

It’s just been confirmed that someone lovely I knew had been identified as one of the victims of the bombings in London on the 7th of June. We’ve known she was officially missing since late last week, and seeing her pictures on the front of the Independent on Sunday (a UK newspaper) at the weekend was agonising – couldn’t read it. I’ve just heard in the last few minutes it’s been confirmed – the tiny spark of hope that she was somewhere in the corner of a hospital, or lost, or hiding, has gone.

It’s been very hard not saying anything on this weblog – it seems either such a trivial medium, or that I’m trying to make her loss, or her partner’s, or her family’s my own, and while it was unconfirmed, seemed inappropriate to say here. This weblog has always been about me trying to reconnect pieces of myself up again, and make sense of my life with illness, and Liz mustn’t, can’t be used for anything but to remain herself. I feel so sorry for those who knew her, knew her much more than I did. And she’d snigger at me eulogising her as some kind of saint, and probably throw a cake at me. It’s hard to say more than that she was a very special kind of person – you know the kind you meet for the first time: you’re feeling a bit nervous, and she jumps in and surrounds you in a little invisible bubble of comfort and safety and gentle poking? She was very intelligent, very witty, without ever a trace of anything but leaping engagement and kindness. I’m sure everyone has faults, but I can’t think of any. Maybe she once burned ants with a magnifying glass when she was 10 or something. In January 2000 she called me a “little minx” – some people are very knowing.

It feels bitingly cruel of me to use the past tense about her in the preceding paragraph, like I’m physically causing someone pain. In another forum I maintained stubbornly I wouldn’t do this at least until it was confirmed. It feels like forcing something, like trying to accelerate backwards in a car. I still feel like that about my mum: she died before the internet, and she’s still a present-tense person to me. I actually have to correct myself to using the past as the words slip out. Maybe this is my christian heritage – a relic of the time I believed there was someone who loved me infinitely, and who would look after me forever. Or maybe it’s because she is around: my mum, my only achille’s heel to agnosticism in my atheist’s cell. Maybe Liz will always be present tense to me too – maybe she should be.

So, no eulogies, no ranting about whose fault I think this is, aside from the wicked and stupid souls who blew themselves to pieces to ruin so many others’ lives: that’s for another day. And not to forget how many people die every day in Iraq, and how every human’s soul is equal in weight: just a recognition that I knew this soul, and that makes a difference to mine. Liz, stay in the present tense: you’re so wildly missed and when the web pages dreading then mourning such an early loss are old, you’ll still be wildly missed. I hope, hope that those for whom your loss cuts the most deeply will find the most love and reason to get through this. And that you’re safe.

Liz usually used to end her mails with a quote: I’ll end with one of hers from 2002:

So then, farewell.
Your arse
Was far too special for them
Anyway.
Or so your mother said.

Doesn’t God decide?

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I had a comment on an old entry in this weblog today, which really encouraged me to write back. I’m still quite ill, but hope my anonymous commenter doesn’t mind me copying her/his text here, and my reply. I wrote enough that it stopped being a reply, and became an essay, and I don’t expend that much energy without physical cost just now. So, it’s not profound, but here it is.

My commenter:

Hello, I just stumbled onto your page while looking up the dangers of manganese in showers!??? Anyway its very interesting and eloquent. May start watching it.

It’s certainly very surprising that feminists can be so needlessly offensive to an oppressed group. However I can’t say I find the basic argument that maleness and femaleness should be defined by biology, rather than personal identity, to be objectionable. To use your own comparison of race, do you think being black is about identity rather than biology/race? Is a person black if she or he believes herself or himself to be black? I don’t want to offend you but I do think sex/gender is defined by biology, in exactly the same way that I think being black is about race.

I just think that in an ideal world then people would not make a thousand and one assumptions because of a person’s gender. If being male or female was no more fundamental to a person’s identity than having a wide face or a thin face, or having a good sense of balance or a poor sense of balance, or having blood type A+ or A-. I’d love it if we had a gender-neutral pronoun to replace his and her. I think that ideally, gender would be just a physical variation which isn’t crucial for defining one’s sense of self.

- superfreak

Superfreak, firstly it’s a nice surprise to get a thoughtful comment on an old article – thanks! You’ll have gathered if you read newer articles that my physical health is in a mess just now so I’ve kind of ground to a halt here – but will try and pick up the trail soon. Your comment encourages me to do so, and I may even repost it as a new entry to try and restart my weblog – I hope you don’t mind. I don’t know if you’ll be back to read this, but anyway…

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No, your comments don’t offend me in any way. Any thoughtful comments, including those I disagreed with, couldn’t ever be offensive. How could they be? It’s a pleasure to get a response. But in fact I couldn’t agree with you more: I too believe sex and gender are determined by biology, indeed as you say, being black in terms of skin colour is about race (see catch below). The key here, is that they are determined at different stages in the biological process, as recent research is showing. Briefly and probably inaccurately (I’m not a biologist!): sex (if I can use that to mean body-parts, vaguely, in fact confusingly what biologists call “gender”) is determined by the foetus’s response to floods of hormones early on – all foetuses starting with a female shape – with the ones that react to androgen (because of XY chromosomes) turning male, forming testes, which continues the masculinising process, etc. Google for AIS to see what happens when a male foetus doesn’t react to androgen. Gender, in the way society/sociologists/the transgendered community use it, is about who you are – in your brain/mind. Again, there’s mounting evidence that this part (whether you feel like a boy or a girl) is formed by the effect of chemicals in the womb at a later (separate) stage of foetal development. The key here is that I’m agreeing fully with you: I think we’ll find gender identity is highly defined in the womb, but the gap between your slash in “sex/gender” is important. It makes it conceivable that people like me exist (and lots of us do) who can have one physical sex and the other internal gender identity – which really means a female brain in a male body, or vice versa.

Sorry this reply is so long. I hope you or someone reads it and finds it explanatory of at least my position, and many others, and I hope some of the rest of my weblog explains this a little too, rambling as lots of it is. As to your last paragraph, I agree strongly too. Gender role is a very separate thing from identity, an (understandable) invention of society, and it’s terrible when people are forced to act in a role they may be uncomfortable with, because of how their bodies look. Transgendered people feel this more keenly than anyone: it really hurts, and has for all of my life, and in our gender-inflexible society can kill. I’d also reflect this back to your comments on being black: like being “inuit”, or “gay”, or countless other things, these indicate strong biologically-determined identities: but can also quite separately refer to what I would see as analogies to gender role: they define who I feel I identify with, where my “home” is. And very important social roles can exist without biological pre-determining factors too of course: being “rastafarian”, or “pentecostal”.

You say in your last sentence:

I think that ideally, gender would be just a physical variation which isn’t crucial for defining one’s sense of self.

I’m not actual sure what my response is to this: I’ve often thought I’d like the world to consist of gender and sex-neutral blobs, when at my lowest and most pessimistic with regard to my own position. But I also often think sex and gender are wonderful things: giving us a sense of me-ness, of gentle polarity and definition which I’d rather have than blobness. And people don’t invent things on a whim: horrified as I am by modern (largely western) society’s christian and post-christian resistance to gender variation, unlike many other society’s acceptance of people like me as being natural variants rather than being wrong, bad or mad, gender roles seem to have evolved in every society we know of. There must be a reason for these roles being so deeply embedded, as well as the general need for sex differentiation for evolutionary diversity, and, being so pervasive it’s probably good for us in general, although of course good things can be used for bad so so often. This is however the least strongly emphasised paragraph I’m writing here, as I’m not sure what I think: certainly, the ubiquitous evolution of some social trait in all societies is no evidence of its moral worth.

It occurs to me in retrospect that resistance to gender role prison is what this weblog was supposed to be about from the start: saying I’m sick to death of acting out a male gender role when my gender identity is so clearly female. But I’m aware many others non-transgendered (cisgendered) people fight a similar fight with societal expectations. That’s why it’s so disappointing when those others who reacted against the same policing, referred to in the original article, deny us the same freedoms.

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Finally on gender-neutral pronouns! There have been a zillion attempts at this, but as a (very!) amateur linguist I’d say it’s very hard to force new terms into language – its progress is too organic. Memes sometimes catch, for very interesting reasons, but you can’t just invent a new one and hope that it catches on (see my whimsical attempts at doing this with terms like jeebo/beejo!). For some interesting history of attempts at creating gender-neutral pronouns, see an FAQ here. Lots of people do persist in trying to use terms like “hir“, but for me, the good old “they” works well enough. Prescriptive linguists of 50 years ago thought it improper to use plural terms about singular objects (“a person walked into my shop today: they wanted some flowers”), but linguists of today generally tend to be more descriptive, and say it’s perfectly acceptable and a good example of the flexibility of language. Jane Austen used it..!

Images taken from the film “Ma Vie En Rose”/”My Life In Pink” by Alain Berliner, which is probably a better way of understanding being like me than the above article. It’ll probably be in your local DVD outlet for rental.