Lego Language in the Garden of Eden

After yesterday’s stark, awful entry (only to those UK residents with CFS/ME, maybe), I’ve been trying to get less anxious by diverting my tiny brain. I tried looking at pictures of kittens on the internet, but it didn’t really work, so while talking about nonsense with a friend of mine on MSN, I decided to just get really silly playing with the terminology thing and see where it would go. Let’s pretend we’re in the Garden of Eden, and we want to say who we are, and what we like. If I can express states of biological sex vs internal gender identity with terms like jeebo and beejo, why not have an optional attachment to be able to succinctly state your sexual preference?bricktest3smal.jpg Again, I stress that the point of this isn’t just silly wordplay: I’m trying to find ways to scratch the current categories of words, which can be misleading, and express important facets of human nature in the simple most elemental terms, like Lego. It’s playing with bricks, yes, but might illuminate why I feel uncomfortable with the current set of labels, or if I’m just being picky.

So let’s play with some bricks: what if you’re a girl-in-a-boy-body (g-i-b-o – “jeebo“) and you like boys? Then you’re a jeebobo.
What if you’re a non-transgendered man, who’s straight? Then you’re a beebojo. What if you’re a bisexual transman? beejobojo. You could even use the order of the suffix to order your bisexual preference, if you wanted: -bojo if you tended towards men, and -jobo if the reverse. Or I guess beejobi if you really didn’t want to express a preference, loathe as I am to use any previous terminology, as we’re imagining here we’re children in the Garden of Eden, starting with language again. So I’m going to use -bojo and -jobo interchangeably.

Pushing a little further, imagine a world where we think freely enough about gender/body variance that people differentiate between whether they are attracted to particularly-sexed bodies, which might be at variance to their preference for the mind contained therein. Some people are attracted to transgendered people. This is easy to incorporate too. If you’re a biological and gender-identified woman who is attracted to FtM transpeople, you’d be a jeejobeejo.

What about if you’re a transperson who’s had surgery? Then I guess you can define yourself in relation to your body as you see it. If you’ve always identified as a woman but were born in a male body, you were a jeebo at birth; if you subsequently changed your body sufficiently that you feel it identifies as female, you can call yourself a jeejo now. It depends on what your stance is on whether hormones, chromosomes or sexual organs define a body’s physical sex. It really doesn’t matter, and gets rid of the monolith of gender=sex. And you actually could go onto Jerry Springer and say “Hi Jerry, I used to be a jeebo but now I’m a jeejo”. If you were a masochist. That’d flummox him.

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I presume most of my readers are beebojos and jeejobos so I can imagine your patience may be wearing thin. I’ll add one more qualification to really walk a tightrope, for fun. In genderqueer circles in the US, being butch or femme seems to be becoming more of a conscious identity badge too, so to really push this to extremes, you could add a third suffix to express this: -fee and -boo. An example: if you were a FtM transperson who is attracted to biological girls, and sees herself as femme, you’d be a beejojofee. If you were a butch gay man you’d be a beeboboboo. I think the last word is possibly my favourite.

I’d love to make a website where you could tick boxes as to your physical sex, gender identity, sexual orientation and femme/butchness which would then punch out an icon for your website, but I’m too stupid to make one. If anyone wants to help please say!

The other point you’ll have noticed is that precedence is important here, so you don’t confuse your jee’s bo’s and fee’s. It’s dead simple. Just as it is on the map in the human heart, the most central important concepts come first. The order is:

[gender-identity][body][sexual-preference][gender-roleness]

And of course in most cases you’ll only need to use the first two, (or even one?), so you’ll say to your Edenite friend when she calls you “he”, “oh, actually I’m a jeebo”, at which point, she’ll laugh, apologise and share an apple with you.

I feel I should leave a set of exercises with multiple choice questions for the reader like instructional books do at the end of each chapter. “What would you call a bisexual transwoman who identifies as butch and is attracted to mainly women?”. First one to answer this one in a comment gets a gold star! It’s remarkably easy to construct these terms when you get used to it, and a whole lot easier than leaving a messy syntactically complicated sentence to express your identity should you need to at a cocktail party.

I think this jeebobojofee‘s said enough.

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Afterword: it comes as no small surprise having written this that this book exists: I’m happy to give it some publicity in return for images. Apparently it’s a bit controversial. The author is quoted as saying “And while it may strike some people as odd that God called on an atheist to illustrate the Bible in Lego, remember that Moses was a murderer before he was called, and Paul a persecutor of Christians. So by comparison, I’m practically a saint.” His website, The Brick Testament is fun, and hardly more profane than the supposedly sacred and downright terrifying With You Always site.

The undeserving sick

“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment.

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service”

- “M.E. What do we know (real illness or all in the mind?)” – lecture given in October 1999 by Dr Michael Sharpe hosted by the University of Strathclyde, my emphasis

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Problems or Solutions? – Eileen Marshall & Margaret Williams, 23rd February 2005

“… We submit that this amounts to denial of the human right of fundamental freedoms under the Human Rights Act, since the Act requires that all public authorities must pay proper attention to a person’s rights when they are making decisions that affect a person. Public authorities include Government Ministers, civil servants, local authorities and health authorities. The Act requires that those in authority do not ride roughshod over people’s rights and must be careful to cause the least possible harm to individuals. To deliberately withhold the provision of appropriate medical care to those with one specific neurological disorder does result in actual harm and we submit that the time is now ripe for the decision that is known to have been taken by those in positions of authority (namely, that people with ME are “the undeserving sick of our society”) to be robustly challenged in the Courts by means of judicial review.

“It can no longer be denied that there is an enormous amount of available published evidence that ME/ICD-CFS is not a primary psychiatric disorder but a multi-system physical disorder of extraordinarily incapacitating dimensions that affects virtually every bodily system, most notably the neurological system, the immune system, the endocrine system, the musculo-skeletal system, the cardiovascular system, the respiratory system and the gastrointestinal system. It has distinct cardinal features that are not difficult to differentiate from psychosocial disorders, but Wessely School adherents are renowned for their intransigent dismissal of any evidence that does not accord with their own construct and so they advise that no-one should even look for such evidence, even to the point of advising Government that “no investigations should be performed to confirm the diagnosis, which is a clinical one” (Joint Royal Colleges’ Report on CFS. 1996: CR54: Summary for Commissioners, page 45) because they believe that carrying out investigations would reinforce patients’ aberrant belief that they are physically sick.

…”We submit that urgent action now must be taken and that since all efforts to enlist the support of MPs have proved ineffective, the only route left is via the Courts by Judicial Review (JR). The procedure for JR is that firstly, a written application is made to the Administrative Court at the
High Court in London; this will be considered by a Judge who will either allow it to proceed or refuse permission for it to proceed. If the Judge refuses permission, there is an automatic right to a Hearing in person before a Judge, who may grant permission for a full Hearing. Should permission still be refused (and the Prime Minister’s apparent influence
over appointment of certain members of the judiciary has been raised in the media), there is the option of lodging an appeal to the Court of Appeal. Should this be unsuccessful, a fresh cause of action may be submitted to the European Court of Human Rights in Strasbourg.”

Naming II:

This is the second in an exciting series of entries about names, and why they’re important, and the strange synchronicity between naming problems with the two things this weblog is mainly about: having CFS/ME and being, um, transgendered. Two preliminary comments:

1. Note the “um” in the previous sentence. It’s hard not to preempt the whole point of this entry about names by naming what you’re going to talk about. Note also the gap after the colon in the title. Um…

2. I’m going to say this a million times, but I don’t want to imply any synchronicity between the physical states of having an illness (CFS/ME) and being born in a body whose biological sex is different from the gender of the mind it contains. The second is not an illness, doesn’t need a cure, and is just difficult to live with in our current, unusually cisgender-oriented society. I’ve talked about this lots elsewhere, so I shall desist from ceaseless babble.

Now, you see that phrase underlined in the last paragraph? That’s the issue at stake here: what to call someone born in this condition (me!), and whether (and what) subsidiary terms could be applied to this term for those who have sought to adjust their body to cope with either their own self-image or current western society’s inability to countenance such a person existing.

Note two starting blocks here too: firstly, I’m not again going to debate whether this state of being exists right now: it’s a bit like me asking you to debate whether your mum and dad actually existed.loo-purple.gif Secondly, I’m going to assume it does make some approximate sense for people to call themselves “male” or “female” or “a man/woman”, and because words are just convenient bendy ways in which humans approximate the world, it makes sense to apply these terms to what we really think of as ourselves – our insides, ours hearts. Physical intersex conditions do of course exist (rather more commonly than believed) in which the person is born with physical characteristics of both sexes, but self-identified intergendered people seem a whole lot rarer. The sense in which anyone can sum up their whole identity as man or woman might seem only approximate if you think very hard on a rainy day, but brain differences really are there, and it should be at least as valid for a person in my own state of being to be able to assign myself a internal gender as it is for you. So I’ll be using “man” and “woman” to mean internal gender identity here. Besides, it’s snowing outside for the first time this year, it’s really pretty and I’m tired, and there’s only so long that this entry can be before I need to stop and just look at the nice white featheriness through the window and stop zapping my achey body with thought.

In time I might get used to referring to gender identity as “man/woman” and physical sex (chromosomes, hormone levels, sexual characteristics?) as “male/female”, but intersex people teach us it’s all greyscale physically anyway. And I’ve discussed elsewhere how stubborn I am on the existence of a core wired-in gender identity in each of us (contrast with mutable gender roles), and I’ll continue to be stubborn about that. So give me a break! I bet everyone reading this knows if they’re a man or a woman. So do I.

So. Like all words associated with the birth of new concepts, particularly contentious ones, they’re stirred up and spin into popular use in a linguistic baptism of fire, forking into many different terms with crossover meanings, all communicated, misused, redefined and qualified by the subculture which forged them into existence (in a rush to become visible) and the critical culture around them. The result is linguistic soup. I say “new concepts”, of course recognising that it’s not really new, but re-emerging: lots of others cultures already had words for us without blinking.

The most obvious words existing for people like me begin with the prefix trans-: words like transgender, trans(s)exual, transwoman, transman, and then some other words that are really associated with quite different things such as sexual persuasions or kicks: transvestite, etc. Then there’s a slew of associated terms, MtF, FtM, transgenderist, etc. and again a lot of misleading seemingly associated terms, which are actually about sexuality and using characteristics of the opposite gender, usually surface roles, to make a point: for instance in drag. Hopefully I don’t have to explain that sexuality has little to do with being, um, transgendered.

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The most balanced general description of the history, developments and disagreements about these terms I can find readily is on the Wikipedia website. I quote for the definition of transgender:

The term remains in flux, but the most accepted definition is currently:

People who were assigned a gender at birth, based on their genitals, but who feel that this is a false or incomplete description of themselves.

Another one is: Non-identification with, or non-presentation as, the gender one was assigned at birth.

Transgendered people may or may not have had medical gender reassignment therapy, and may or may not have any interest in such a procedure.

When referring to the two basic “directions” of transgender, the terms Transman for female-to-male (which may be further abbreviated to FtM) transgendered people and Transwoman for male-to-female (which may be further abbreviated to MtF) transgendered people are often used. In the past it had always been assumed that there were considerably more transwomen than transmen. However, the ratio is approaching 1:1.

I’ll have to dive in here and say as I’ve said before that I don’t like the trans- words, particularly when applied to gender (but will often nevertheless use them because they’re the best of the little-understood words). Here’s why:

Think quickly: what does trans- imply to you? I’d suggest one of two things which are more or less closely related:

1. Changing or moving from one place to another: transfer, transport, translate;

2. Being between two states or lying across a boundary: transverse.

So, what does the word transgender imply to Homer Simpson? I’d imagine he’s thinking (if he thought) of someone who either (a) is lying between the two genders mentally, half girl/half boy, or (b) has moved from one gender to another.
We can dispense with (a) quickly: there’s already a word for people who (relatively rarely) think of themselves between genders: bigendered. As for (b) I’d contend that’s impossible with gender identity (as distinct from gender role, with which it’s of course possible to swap and play around). As David Reimer said so memorably before his death with regards to being raised in the opposite gender and his eventually traumatic rejection of this:

As Nature Made Him

I was never happy as Brenda, never. I’d slit my throat before I’d go back to that. I’d never go back to that. It didn’t work because that’s life, because you’re human and you’re not stupid and eventually you wind up being who you are.

Some people might disagree with this hard line on the immutability of gender: but I’ve talked about Jerry Springer enough.

Note that transgender as originally coined in 1970 was sometimes actually supposed to mean “lying between genders”. It’s now however generally used as an umbrella term as defined above.

So where did the word transgender come from? Probably as a reaction to the word transsexual for two reasons: firstly because people like me who haven’t resorted to medical intervention need a word, and secondly because anything with “sex” in makes people think of, well, “sex”, before they think of physical sex (“male”, “female”, chromosomes, hormones, unmentionable body parts and all that).
So what about the word transsexual? Much as I dislike it (see above connotations) it makes a bit more rational sense if applied (only) to those who’ve undergone sexual reassignment surgery (not “gender reassignment surgery” which would require a brain transplant!), at least as far as changing the outward sexual characteristics go. But it’s not as if all your XY chromosomes are flushed out and supplanted with XXs, or vice versa, or that you suddenly become fertile in your self-assigned new sex. In a sense, you become intersex, although not born that way. I suppose both trans- definitions above therefore do apply, but they encourage the usual confusions (“I used to be a man, now I’m a woman”), and have become something that sometimes sound a bit negative to me. To me I should stress, as it’s very subjective, and probably TV and my impressionability’s fault.

What of the other words? Transwoman refers to someone whose gender identity is a woman but whose birth body was male, and vice versa for transman. But because of the confusion of the trans- prefix, I have a feeling they used to be used the other way round, and my friend in Sweden tells me they still are there: in Sweden I’d apparently be referred to as a transman, which would lead to a whole new level of mess, and I don’t want to be referred to as any kind of man. Plus, they sound a bit Star Trek. MtF and FtM? Horrid abbreviations, make you sound like a genus of grey alien, and, like
“transman” in Sweden, the subliminal first hit of the first letter to someone new counts for a lot. If someone hears “transman” they think “man”, and I’m pretty sure if you flashed the letters “MtF” at someone in a lab with electrodes in their brain they’d first think “man”, when the whole point is they should be thinking “woman” first. “MtF” is supposed to stand for “male-to-female” (see “transsexual” discussion above) – why on earth not rather say “FfM” (“female-from-male”) if you have to have a three letter acronymn. The “F” or “M”ness at the beginning matters, I’m quite sure.

So where do we go now? Coining new words rarely works, and I’m not usually one for battles about names: the constant fights in the world of CFS/ME to invent new names, while meaningful, are exhausting. However, I think words so misleading at first sight (which is what matters) can really be a problem to a beleagured minority. much as I have to continue to use them for now. I think we might need a word for being born in a body whose biological sex is different from the gender of the mind it contains that isn’t “transgendered” and I don’t think it should be “transsexual”, as this logically implies surgery. “Genderqueer” is gaining some acceptance in the U.S. as an umbrella term but it’s not specific enough for use in this instance, and to most U.K. people “queer” connotes sexuality still, rather than “not like you”. I’ve wondered about silly invented terms while trying to sleep like XYXism (“zicksism”?) but that falls into the same traps as everything above – it’s not about chromosomes. Reverse the words? “Nanow” for me, “Nam” for a transman? Silly night-time reveries that don’t really imply the simplicity of the fact of existence for people like me, which really isn’t a hard concept, at least to someone in a teepee.

Brandon Teena before his death

Brandon Teena

I keep falling back on jeebo and beejo! Just because they most simply express a concept children can understand (from real experience): I’m a “girl-inside-boy-outside”, g-i-b-o or jeebo.
Brandon Teena was a beejo. They’re fun words, they sum up the essential facts of existence, and they don’t imply any necessary physical intervention: they describe a state of birth. I can see this weblog’s going to need a glossary.

Any word defining a minority makes that minority seem… well “not-normal” and can lead to pity or brutality just as public consciousness of this minority begins to emerge. A good way to combat this is to define the majority and set up a friendly polarity, so that the majority think “hey I’m something too” rather than just feel normal. “Heterosexual” is the best example, and I bet Europeans didn’t think of themselves as “white” until they met people who had different skin colours. “Monosexuals” is another nice way for bisexuals to point out that hetero- vs. homosexual aren’t the only two valid options. In this sense, most of you, dear readers will be either jeejos or beebos. Please spread this meme!

I’ll leave you with a thought about the word “cisgendered”, coined with very respectable Greek heritage to mean “not transgendered”. The alternative to coining new words of course is reclaiming hate speech as your own: “queer” and “nigger”. This thought from the Wikipedia article:

If trans people can be called trannies for short, then cisgender people can be called “cissies”.

Blogblock

I’m getting blogblock, in spite of all the kind comments sent in (thank you so much! I never knew anyone would read this weblog). I’ve been trying to work out why, and I think it’s partly because I promised I’d write something, so therefore, of course, can’t.

. o O (never promise to self to write again)

It’s also that I’ve been iller again and anxiety very high; and this weblog’s new, but even the new girl in school only gets the first week or so off before the hair-tugging starts, and there’s only so long I can bleat on about my anxiety and the various weird tricks my body pulls out from round each corner. So this post will be the equivalent of a plumber popping round to clear my blogblockage: something to fix a mundane problem (a blocked drain, a plugged-up sink), not something to look forward to, to savour or to revisit mentally. It’s for me: and expect no cheery whistling from this plumber. He’s a mean plumber, and he wants a cup of tea before he starts work. He’ll probably overcharge you for a ballcock. I’m going to get rid of him as soon as the U-bend’s fixed.

Plumber

So you don’t need to read this. The only conceivable reason may be if you’re one of my nice new friends with CFS/ME and want to compare notes. The rest of you – move along now, nothing to see. Oh, you could glance at the blockquotes at the bottom of the entry.

The main problem from which I think everything stems just now is sleep. Symptoms: taking much-frowned-upon-in-UK sleeping pill every night (sharp intake of breath from every GP in the UK, nod of approval from my private M.E. specialist). Zolpidem 5mg. Plus anxiety popper, clonazepam 0.5mg. I then float on the surface of 10,000 dreams for 5-6 hours and my eyes suddenly open dead awake but exhausted, heart-racing, and I’m immediately aware I’ve been in some near-awake state for what seems like hours, floating just near consciousness and pushing myself back under: the closest analogy I can think of is that I’m trying to go under water (and I hate water), and I have a million floats attached to me – my near-consciousness pushes me back under (“sleep! sleep!”) and I dream a million dreams every ten minutes I’m asleep before the floats push me back again. I dread to add “like a bloated corpse”, so I won’t. Then after 5-6 hours I’m awake, that’s it. I sometimes try another clonazepam then, doesn’t seem to help. I’m in total confusion about whether they are supposed to aid delta/stage-four sleep, unlike the other benzos which kill it. I thought I read they did. Certainly it feels like I’m getting dreamy-dreamy non-delta sleep all night long.

Tried:
drugs as above;
expensive and ugly bodyclock which is supposed to give your body a simulated dusk and sunrise – I’m either awake 3 hours before it, or it doesn’t wake me;
black-out curtains (called “light-out curtains”, presumably because, like in a sitcom of old, they don’t want us to think about the war) – they let in the light;
bedtime “hygiene” – not sitting in bed when I can help it, the milky drink thing… when I was allowed dairy;
plants – all the valerian type things that might knock a hamster out if he took a few hundred;
nytol – the anti-histamine that didn’t work but they found made people sleepy and now market as a gentle sleep-inducer – pfft! bring on the morphine;
thinking – count sheep, relax each part of body, pretend you’re writing on the back of your head (this last one from an actor from Coronation Street on a daytime chatshow – my research goes far and wide).

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Not tried:
socksVicky’s grandma’s suggestion to go to bed in a pair of wet socks.

So I’m left wondering where my sleep went, spending the days in a doze, being intensely boring or anxious online with people who are being kind and keeping me going, and repeating the same things repeatedly, all the time, repeatedly to the same people, all the time, repeatedly; and also repeating all the same things all the time. My memory seems really impaired.

My sleep’s always been poor, but this is a seachange. Where’s the sleep gone? (a) diet, (b) clonazepam, (c) anxiety, (d) tinnitus/hyperacusis retraining device? Blasting white noise into one side of my brain for five hours a day (it’s as far as I got) can’t be easy on an organ already damaged by the weirdest imbalances and immune problems. So my doctor says; so my audiologist agrees, or at least that I stop it for 3 weeks and discuss. Caught between evils here, as I’m very anxious my hearing is worse.

My private doctor’s told me I’ll never get well if I don’t get 9 hours’ deep sleep a night. This is quite hard to swallow, as 6 hours fitful seems like a far-off target. She’s telling me to take more drugs to do it, and I’m very scared of tolerance and dependence, and the fact that my family doctor will have even more reason to write me off as a lost cause.

I’m also told that I have to change from being an owl to being a lark, which is even harder than my current diet of no dairy, no wheat, corn or any cereal, and no sugar except one piece of fruit a day. I usually go to sleep at 3-4 a.m., constantly feel bad about it, and try to figure out why I do it. I think it’s because my anxiety lifts at midnight, and because I fear sleep and the horrid dreams and exhaustion from half-waking all night long. My doctor wants me to be asleep by 9:30pm. Now this may not seem like so disastrous to those larks reading this (presumably at 7am) but to me it’s near impossible. Myself and The Doc settled on midnight as a first target after a brief tussle on the phone. Isn’t your larkiness or owlishness supposed to be gene-based? I’m left more confused.

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There seems to be fairly widespread thinking that the hypothalamus function is damaged in the majority of CFS/ME patients (those who don’t think we’re making it up), and I’ll pretend I know how this is linked to sleep. This article may help those who know more about medicine to understand (and explain it to me). You therefore have permission to accuse me of being “hormonal” if you like when I’m anxious or snappy, with some accuracy. Because of this, apparently it’s likely that my melatonin levels (the hormone that helps you regulate when it’s night and when day) are crazy, and she’s sending me some to top them up. It’s something that can’t be prescribed on the NHS in the UK but is readily available elsewhere in the world. Dr Myhill’s opinion is that this is due to some ridiculous political nonsense in the UK rather than genuine health concerns; but I’m a bit concerned by reports like this one from Berkeley (via Circadiana):

“It really amazes me that melatonin is available in any pharmacy,” Bentley said. “It is a powerful hormone, and yet people don’t realize that it’s as ‘powerful’ as any steroid.”

If anyone knows a lot about melatonin, pineal glands, sleep hormones, or just wants to drown me in third-eye mysticism, please do.

I’ll leave you with some quotes from job adverts recently gone out for positions at the UK’s new “Chronic Fatigue Centres”, as a result of the knock-out win by the Wesseley school to ensure that people with CFS/ME in the UK will be stigmatised for years to come:

Employer: Royal Liverpool & Broadgreen University Hospitals NHS Trust
Job title: Trainee Clinical Fatigue Therapist

1. Psychological treatment involves delivering a highly complex understanding of the psychological, physiological and social factors of CFS to severely disabled, fatigued patients and relatives, in order to change perpetuating illness behaviour and motivate patients to perform a self-managed activity programme, regulate disturbed sleep patterns and modify predisposing personality style.

2. Clients with CFS, because of their chronically fatigued state, experience barriers to understanding. For some clients there can be significant barriers to accepting the changes needed in behaviour, which have to be overcome in therapy in order to facilitate a successful outcome.

5. As some clients with CFS may be resistant to working in a psychological framework there may be exposure to verbal aggression.

Employer: Epsom and St Helier NHS Trust
Job title: Highly Specialist Clinical Psychologist in Chronic
Fatigue Syndrome Management

Patients referred to the service often present with complex medical and psychological problems, are highly distressed and may have difficulty accepting and be hostile to the rationale for adopting a cognitive-behavioural approach to the management of their fatigue.

In addition, patients using this service may have problems of an intimate nature eg sexual difficulties, history of trauma or abuse, which are not suitable for treatment in a group setting.

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I’ve made the comment above flippant, but I’m really terrified by these job descriptions – it means the UK’s moved on from the theory that CFS/ME is largely/wholly somatic to applying it in genuine way. Next stop: those who don’t cooperate will lose health service goodwill and benefits? It honestly feels like I’m about to be put in a cart and taken to Siberia for reprogramming. Apparently they are going to “modify” my “personality style” so I start to realise that I’m perpetuating a mythic illness – and I’m about to hit someone – and it’s all because of some sexual abuse or trauma in my past? Sure, I’d like some coaching into adjusting to my disabilities; I will “have difficulty accepting” and might “be hostile to the rationale” only if you don’t also talk to me about the plentiful research into organic body chemistry differences found in countless patients with this disease and what you might like to try for my body too. It’s a catch-22 – even in typing this, I’m becoming a “resistant” patient – another kind of refusenik. I hope readers with CFS/ME in other countries whose doctors are looking for and finding distinct biological markers for this disease are shocked by this – we may need your help very soon. My partner and I discussed emigration last night, and added up how many points we could get to get into Canada – really.

I’ve financed my own cognitive therapy for years outside the NHS to help with my ability to cope with living in a world with illness, and a body that doesn’t fit current perceptions (umm, wait, I need to pay for that..?). I’ve done my own “graded exercise” in the past – walked hard for 30 minutes every day at lunchtime when I was working. But apparently I need a brain transplant?

This entry’s not going any further. I was going to go on about how anxious I am, but there seems little point as it’ll bore you, and make me more anxious, as quoting the above has done. Maybe writing this will unplug something just to say it, and if anyone got this far, to beg patience from those kind, sweet, well people who spend their time online buzzing me with messages, little funnies, encouragements, pictures and mp3s. And also to everyone who has been sweet enough to send unsolicited mails of kindness, other than those people who keep asking me if I want a bigger penis, which shows just how badly targetted spam can be. I’m working on mailing you back. And I’m really sorry I’m so changeable and hard work, and please keep nagging me. Aside from the obvious misnamings, I really should have been christened “Handful” at the font.

Because we shouldn’t have to.

Nightcrawler: They say you can imitate anyone, even their voice.
Mystique: [as Nightcrawler] Even their voice.
Nightcrawler: Then why not stay in disguise all the time? You know, look like everyone else.
Mystique: Because we shouldn’t have to.
- X-Men 2

mystique4.jpg
I recently discovered via Wikipedia that I’m a gender refusenik, or, even better, a gender otkaznik (Otkaznik (ru: “отказник”, from “отказ” (refusal, rejection)). Brilliant! Nothing like being told what you are by an encyclopedia. I imagine many gay, lesbian and transgendered people have had the experience sometime around their early teenage years, but I didn’t really expect it at my age. “Refusenik” has generally got two accepted uses:

1. Those denied permission to emigrate abroad, particularly Soviet Jews.

2. Those who refuse to serve in occupied territories, particularly in the West Bank and the Gaza Strip.

So, two shades of meaning, one implying denial of certain freedoms by external circumstances, and the other a personal unwillingness to participate in something you don’t believe in. I’d like to think my otkaznikking is very much a case of the second definition; but there may be a bit of the first thrown in too. We’ll see.
Why a gender refusenik/otkaznik? Well, it’s very much a case of “I thought I was the only one”, but the quote from the film X-Men 2 at the top of this entry sums up my feelings on being a person who, on being born and surprisingly finding herself in the odd position of having a body that doesn’t match her insides, looks around, sees transgendered culture as popularly (self?-)identified on the web, and doesn’t much like it. I should add I didn’t like X-Men 2 much either, but the person I accompanied to see it in a rural Irish cinema was thrilled, so I was happy. Just as I was beginning to doze through the mutant/alien/special effects mush (sorry!), the quote above jumped out at in such a bizarre non-literary environment and brought tears to my ears because of the resonance with my own feelings. The context (for those like me who don’t really do scifi) is that a segment of the population grow up as mutants (but are misunderstood very nice people really), and can do standard stuff like freeze people by touching them, runnng through walls, and, oh I don’t know, turn enemies into hedgehogs or something, and these mutants are persecuted as a minority. Mystique above mainly runs around in a sprayed-on blue scaly body suit in the film, which is presumably as near to nudity as the film-makers dared go for the parents’ sake while keeping their options open for a children’s certificate. She can apparently turn into other shapes at will; the above dialogue explains the rest. Why doesn’t she just morph into looking like a non-mutant and stop being persecuted? Because she shouldn’t have to.
I may have lost most of my cisgendered (that’s you) readers already, and I can feel disapproving glances from transgendered readers. But I’m really uncomfortable about lots of aspects of transgendered culture, to the extent of not liking the trans* words at all (see my Naming II entry whenever I write it) and not even wanting to have used them in reference to myself to friends , but they seemed like a shorthand I felt I had to use at the time: with hindsight, I’m not sure I would use them again in such an email.
The basic fact of being born this way, is that your brain and therefore mind, personality, soul if you’re religious, identifies itself very early on as being of a different gender to your body. If there was a word for “girl-inside-boy-outside” (and I bet there is in Finnish, or Anglo-Saxon) then I’d use that. The prefix trans- raises lots of problems, discussed elsewhere, implies a transition from one place to another, and using a suffix referring to either gender or biological sex after it just confuses more. Frankly, I’d rather be called a g-i-b-o (but please, at least, let’s pronounce it “jeebo“).
So “girl-inside-boy-outside” (and vice versa for b-i-g-o’s: recent studies show there are just as many beejos as jeebos) is how we are born. And since sex reassignment surgery existed, it’s been seen as “the answer to the problem” within western society – the goal being to change your external appearance sufficiently that you become invisible as such a person, and disappear into the mass of people with the same internal gender as you had all along anyway – in my case, a woman. Those who can’t or choose not to do so are told they in an incredibly high suicide category, they’ll never be happy, etc.
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And yet, in lots of other societies, this just wasn’t and isn’t the case. No room for details here and cultural interpretations vary: but most Native American tribes recognise two-spirit/Berdache or Winkte people, Tongans Fakaleiti, Indian culture Hijra, part of the Arabic work Xanith, Maori culture takatäpui täne ki wahine. Modern western culture lost this idea somewhere along the line.
Being of one gender in your brain while another physical sex in your body is about as difficult a concept as understanding that some cars come left-hand drive and some right-hand drive, regardless of whether they’re made in the UK or France. Sure we’re made for a minority market, but we’re not badly manufactured: just specially made. The few children I’ve explained the jeebo thing to have casually shrugged, asked a few impertinent questions (brilliant!) and carried on quite happily. I’ll never forgot one response when I told a small gorgeous wide-eyed child I was a girl on the inside and a boy on the outside; an hour later when we were walking along a quay, he said “we’re outside, does that mean you’re a boy now?”. He looked a bit glum when we all giggled; I had to rephrase it and he was happy.
As we get older, we seem to get a big block on this. If someone looks like a girl, they’ll feel like one inside, right? I’m not referring to gender role here, but identity: who she feels she is. If she thinks (and has always thought) she’s a he, then for some reason, this can’t be so. She must be mistaken, have suffered some childhood upset, be unhappy about her gender role, or just be mistaking being a tomboy for having a central male gender identity. But it’s such an easy concept to understand: body doesn’t always match brain. How did we get such a blind-spot that such a thing might happen, when most other societies saw it plain as day? Imagine biting into an apple pie and finding out it’s cherry: “Oh! I didn’t realise! How nice!” would probably be a more sensible response than telling the cherries they’re really traumatised apples.
It could be that I’m a bit transphobic, just as many gay people were homophobic a few decades ago. I’m certainly not very self-liking just now. But I just feel very uncomfortable about the reams of websites by transgendered people, particularly transwomen, that endlessly display photos of themselves made up for the studio, discuss hair removal techniques, vocal training techniques, and show what to me looks like a ghetto. I’ll repeat myself frequently on this weblog, but for me it’s always been more about hearts than handbags: there’s nothing wrong with any of the above but I just sense a deep lack of balance about where the heart (identity!) is in all this. All the above methods are ways in which transwomen can appear to have always had the body considered as more congruent with their internal gender. It’s (some would say necessary) subterfuge – the ultimate goal being to “pass”, dread word, i.e. not be spotted as a transgendered person, and then in many cases to slip out of the transgendered community into “normal” society, bolstering up the view that such mixes of brain and body don’t occur in nature.
Obviously this just encourages the self-perpetuating view that being transgendered is, well, odd, rather than just unusual. The current way the state deals with people who seek reassignment surgery is to make “patients” prove their intentions, by conforming to some idealised (almost 1950s) view of their internal gender identity: “living as a woman” for a specific period of time. Lipstick, nail varnish and heels get you a huge tick on the road to surgery. Why is this necessary? Isn’t it a confusion of gender role with identity? In what sense am I not generally living as a woman now? The name almost everyone calls me by is generally recognised as being more feminine than masculine; I wear “girls’ clothes” (jeans and tops, some jewellery, like my other girl friends); my partner has seen me for years as a girlfriend. Equally insane to the idea that a transman (beejo!) should be out chopping wood and fighting bears every day.
I’m not saying there’s anything wrong with reassignment surgery!mystique2.jpg If it makes someone feel good, that’s good, just like if you don’t appreciate the shape of your nose, getting it bashed with a hammer might help how you feel about yourself (or might not). For me it would be very convenient to step inside a little booth and come out looking as if I was born as a genetic sexual female as well as a woman inside. I’d probably be blissfully happy for a month, because the upset of being addressed as male (which really does sting) would just disappear. But this isn’t going to happen. It would be misleading of me to imply that my refusenik status is all to do with the proud non-combatant second definition above: my body’s quite ill and probably wouldn’t take the strain, and my judgement is too that the process wouldn’t achieve the ultimate aim, which is I maintain a form of camouflage: to appear to have always had a physical sex that society reckons as congruent with your internal gender. So if I’m truthful, I’m also probably a category one refusenik – no visa to travel. Sure, it would make things easier if I could, but couldn’t there at least a bit of the world have a stab at seeing me female inside without having to jump pre-feminist hoops? This of course requires you, dear reader, to make the little leap of imagination a few year ahead of when your culture does the same.
Yet a little category two refusenik voice inside me keeps asking: would it be truthful in some sense for me to alter my appearance so dramatically? I’m a girl-inside-boy-outside – a jeebo – and at the moment a gender otkaznik. So do I have to feel my whole life that I’m not going to be happy if I don’t alter how I look? “You know, look like everyone else.” A very large bit of me does think, like Mystique that I shouldn’t have to.

Babette’s Beast

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Sorry for the break in transmission. My gastric symptoms really took a hold, and after a hyperactive mailing list day on Friday (sorry, robots) came a very big and I suppose, very predictable mood swing yesterday: so low and tearful and afraid I can’t remember when I’ve been like this for a long time. Just trying to tread tread tread water today, so writing this will either be therapeutic or another bad anxiety trigger. I may quit and run. Oh and my pee went green. Which apparently can be caused by asparagus, which I don’t eat because I don’t like any vegetables beginning with the letter A: there’s four I can think of in British English, count them out for me. So I guess it must be some kind of vitamin/mineral overdose from my silly scoop mistake, which by now three lovely people have apologetically laughed at, quite understandably. I hope last week was all about stupidity and not illness.
I’m currently very scared and feel my leg’s being chewed off by Wolf Dread, although, actually it’s a cousin of his, called Depression, and he’s a bad, bad wolf. It’s hard to describe just how he eats away at your bones. Someone in a #depression channel yesterday, bless him, suggested I “take up some hobbies” and take my mind off it. So hard to describe how, if you haven’t felt the deathly depths that depression can really get to when you can’t even think or move an arm without intense pain, guilt and fear, that stamp-collecting really wouldn’t help. To be bitten repeatedly by the wolves of anxiety, and then when they’re having a break and chewing at a detached limb, to have their cousin wolves of depression attack just doesn’t seem fair. But the jungle’s not fair, as taught by countless David Attenborough programmes about big monkeys eating little monkeys, and sea lions nibbling at penguins; TV that should have a health warning on it, because it’s so upsetting. Human beings can only bear so much reality, and some of us can only take a tiny scoopful at a time.
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And it’s so chilling how intricate the details and subtle flavours of these mood changes are. Anxiety isn’t like depression, it evokes a completely different sensation to the palate, and you can taste the change immediately. And each episode of each condition has a differently horrifying flavour, like the exquisitely laid out dishes in Babette’s Feast; like you’ve never tasted this particular dish before. So you can’t prepare for it, or defend with previously stashed letters to self, diary entries or mental reassurances, because they aren’t relevant to the particular orientation of fears, loss of self-knowledge and disintegration that surmount you.
I get upset when people say depression brings creativity. Bipolar depression may bring on rushes of activity: I can’t speak for this. But it’s a 20th/21st century romance, or consolation, that depressives are at their most creative when beaten down by depression: a coffee-table thought. It’s a sickness, and while others may enjoy the fruits of dipping into that world at leisure in an art gallery before chocolate fudge cake in the nearby cafe and a poster for the wall, if the artist was truly depressed, then they should feel nothing but sympathy. Maybe it’s an expression of the empathy that depression can bring – if you’ve seen it in yourself, you know how unrelievable it is in others – but it’s not an LSD trip. I’m sure someone who’s down for a bit gets to consider things in their life that they may not have, and this may lead to fruitful creativity: but depression itself just suffocates and kills. The little I truly understand of it is that, just when you think you’ve reached the lowest level you could be at, a hundred more levels heave into view below, and you realise you could drop one thousand more. I’m quite sure I’ve only experienced hints of the kind of terrible loss of self and pain some feel.
I’m not going to go into the details of the fears, as from experience it only turns them up to 11; they’re illusionary triggers that try to divert you from the underlying chemistry of disease. I’ll just say one from today: ear fear again. Loud noise in my left ear this morning. Feeling of more deafness – panic. At least three people now have written to me about their ear problems, and some much more frightening than mine: and they have all dealt with them, by the sounds of it, with more dignity and courage than me. I must learn.
Three days ago I received my tinnitus retraining device (a misnomer – the audiologist wants to deal with my hyperacusis first). I have to build up to 8 hours a day. It’s a slightly scary thing to put in your ear. Recently on BBC2 there’s been a program called Tribe where a man called Bruce Parry spends time living with, and being initiated into indigenous tribal cultures all over the world (although, being quite posh, he’s yet to try being initiated as a Geordie). In one episode, he’s sitting in a clearing with his new Amazonian friends in his leaf underpants, chewing grubs, and knows that they sometimes use the grubs to clear earwax (eww..). So they pop one in and start laughing at him as he squirms (apparently the best joke in the Amazonian rainforest is to put the wrong kind of grub in someone’s ear). Anyway, this tinnitus/hyperacusis device has a little antenna, and is just like that: putting a wiggly grub in your ear.
And now it’s later, what I’ve written above seems like a weak attempt to talk myself out of some terrible fear with casual language, and my heart is like a rollercoaster ride.

Car coat, she has a quilted jacket with a hood if it rains
Big pockets for the pharmaceuticals she takes to fix her brain

Something is very bad inside and I have to stop typing now. Today I’ve had a lovely friend playing nice silly games with me online which have cheered up and made me feel more like me, and in another place, the insane breakup of a community of CFS/ME people which I’d just come to feel at home and safe in – and a new dear friend forced to leave – so much for the empathy of illness. fingers.jpg Too much stuff. The supposed detached empirical approach of my last article has become a small mountain to climb, and I expect I won’t be writing Naming II today. I’m trusting that anyone reading this who might meet me online understands that there are levels of presentation you can sustain publically for a little while which belie what lies beneath: but only for a time. But you have to maintain those levels if you possibly can to keep yourself in touch: people can only stand so much misery and illness, just like I can only stand so many David Attenborough programs.
I’m just going to have to post this now, and then hide in my tent and wait out the storm.

Naming I: CFS/ME

There are some uncanny parallels between how ME/CFS (the disease) and being transgendered are treated in current society. I’m trying to slowly find a way of describing these, because they seem to be the hooks on which a lot of self-doubt and anxiety hang for both classes of people. I think it’s a zeitgeist issue: one currently so embedded in western thinking, especially the latter, that it’s hard to see. I’m going to try to look at these, starting with the issue of Naming, which leads to the issue of psychologising what is, on the one hand a serious organic illnesses, and on the other, a benign variation in human makeup like having a nice big nose, but in this case highly stigmatised to the point of torture and murder. And the consequences of this psychologising are that already dispirited, anxious, low self-esteemed people are the one hand not taken seriously in a symptomatic way by doctors, and on the other hand medicalised beyond belief. And I think a lot of this originates in naming problems. Yes that’s right, I’m going to have a moan. This will probably be a three-part post. What I’m doing is called pacing: so first, CFS/M.E.
The condition commonly now known as M.E. in the UK has had a huge number of names in its time, all of which tend to confuse in some way or other. Common names currently: Myalgia Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Post-Viral Fatigue Syndrome (PVFS). You’ll also see the “encephalomyelitis” transmute into “encephalopathy” sometimes, either because it’s easier to spell, or for more sinister reasons. If you like words, you can push further back and find a reference in 1750 by Sir Richard Manningham to a syndrome referred to as febricula which rings some bells; Florence Nightingale and Charles Darwin had something similar. From the 1860s, the name neurasthenia was given to something quite similar, and in the 20th century, various isolated “outbreaks” have given rise to various different names: Icelandic disease in Iceland, Royal Free Disease in Britain, and Tapanui flu in New Zealand. Decent enough histories here and here.

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