All posts by honey

Briefly: the author has the illness commonly called ME in the UK, often classed as CFS elsewhere, and is female in spite of appearances, which is not an illness. This weblog contains her attempts to talk to herself about these things and get a bit happier. Some of those who know her may be a little surprised for which she apologises: but everyone is very welcome here.

Things that still matter?

I’ll have to let others say it for me just now; from a friend. Click on it.

My honest answer is: I don’t see why things matter, but thank you.

If it matters: after all that happened in the last 10 days,
I contracted another flu-like infection at the end of last week, followed by stomach infection which means bad stomach cramps and I can’t hold in food for any more than 3 hours – for 3 days and counting. This after taking more vitamin C (3.5g) to scare off infection on doctor’s advice, but I can’t believe that would do this to me for this long. This is just like the stomach infection I’ve had repeatedly for the last nine months, the first appearance of which coincided with my hearing loss. Doctors shrug; I sit terrified it will reoccur, amplify or migrate to the other ear. If I learned anything from computers, it’s that if you don’t find out why it crashed, it’ll happen again, and do more damage next time. If someone tells you your PC crashing is “idiopathic”, refuse to pay. I feel completely helpless: driftwood at sea waiting for the next splintering wave.

I’ve always had three things keeping me going: friends, music, and my imagination. Friends are only present via a keyboard and few and fewer and increasingly quieter as I get worse to be with; hearing is eating up my music; and my imagination’s suddenly and shockingly dried up, like a rusty tap you dare to turn off, which suddenly won’t turn on again.

I seem to dash from pitch blackness to illness and back again, til I don’t know what day it is: the sequence rushing by ever quicker, scenery streaming past faster and faster, like the dramatic chase at the end of a film. Some monstrous joke where my mind and body alternate lines rolls towards its punchline. The coming of a weekend always surprises me: Saturday feels like Wednesday. How can things go so fast?

Please bear in mind then that everything’s caving in just now. I can pretend cheery for so long then I will crash out, freak out, not answer emails, be suddenly tearful, angry or rude; or, if you’re a close friend be very scared to you, bore you, offend you or make you miserable which will make you want to go and talk to someone else. Which you should go and do. If you are a good friend, you should tell me that is what you’re doing.

I suddenly don’t care about being very candid in this weblog: what is it for anyway? Who’s reading and why? Is this a bad way to think? The next time I am terrible to you, please remember that I know less about what is going on inside me than you do, have some pity, and tell me what to do next. This could just have easily happened to you. I know I’m showing little of Saint Emily’s courage, and maybe you would do better than me. But if you think you would, show some while you’re well too, and either help me or be honest and tell me you’re off.


Love After Love

The time will come
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other’s welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

Derek Walcott

My biggest fear is that when everyone has gone and the show’s over, there will be nothing of my life to feast on, and no stranger to love, just bones and sinew: a life in the lonely waiting room of gender, in the hushed and guilty bed of M.E. Who can fill up a lifetime’s larder of memories from a bedroom, and a mind that won’t issue me a permit for shoreleave? I even have to borrow others’ pictures and words.

My Mayday

Events have transpired to make things blacker than tar since last entry. Sorry for temporary removal of weblog to those who noticed and thought to mail. Weblog was too painful, but seems in retrospect like selfish act of a child smashing up favourite toy. Am in dire straits with seemingly nowhere to turn but can’t explain in public, much too personal – sorry.

A Day


An entry I wrote yesterday: my most shameful and dangerous, but why not just post it? It’s the truth about me, and how my days are. I feel like death today – on the edge of something very bad – so it may be gone tomorrow. I’ll take any help anyone has.

This entry deserves and will get no illustrations. You probably should not read it, and I probably shouldn’t publish it.

09:15
First memory of looking at the clock amidst usual mess of semi-lucid disturbing dreams. Usual sleep paralysis: heart-beating wildly, knowing I should wake myself to calm it, and sleep again. What am I dreaming: about work, about having to be at a meeting in town, for some reason with a schoolfriend, being late, stuck in a bookshop, and almost too ill to move: the usual mess of fears and being stuck, ill, wriggling in a web. Check: is my left ear screaming tinnitus? Yes… will it be a tinnitus day? Maybe. Pain in centre of chest. My hand stumbles across the bedside table to take a clonazepam: three a day, keep it up, and it might help me sleep – fleeting thoughts, always doctors – Dr Myhill says I need 9 hours a night – Dr Cheney says clonazepam protects the brain from the damage caused by CFS/ME. I dive back into the dream too quickly to wake and change it because my body’s too tired to do what it should and sit up for 2 minutes, I’m back in the bookshop, trying to keep a job, trying to keep my friend from when I was 14 happy, and worry worry worry. I’m late, always late, and clinging to the edge of the real world out there I actually left 6 months ago.

11:45am
I wake finally, like dragging myself from quicksand. Oddest most unusual dream, so unlike me: I am with my Grandpa, who died 20 years ago. For some reason we’re in Montreal, where he’s moved to in my dream, and we’re walking down a street, and he looks healthy, his face is full and happy like I’ve only seen in photos from before my memory starts, and I have my arms round his neck and I’m hugging him and jumping for joy: I have a girl’s body, I have hips, I’m about 18, and I’m so happy when I wake I feel a real gorgeous physical pain in the centre of my chest where the fictitious heart is. “I didn’t know you could be this happy” repeating over and over to him in my mind as I hug and hug him and he looks embarrassed and happy and healthy, to have a granddaughter who loves him and loves just being herself hugging him as they walk down the streets of his new hometown.

Where on earth did this dream come from? My Grandpa was old and thin in all my memories, a shuffling humble quiet man, worried about her daughter’s car crash of a marriage. Was I his daughter in this dream, who he loved so much? Was I my own mother, now gone too? Did they two have this flicker of an experience once, of hugging on a street, of sheer joy at each others love, the simplicity of a love between a man and his own sweet daughter? Is it a gift to me, for a second, now they are gone? But I don’t believe in the dead living again, or messages from when they are gone. They did, both: “this world is not my home, I’m just passing through”. But my Grandpa moving to Montreal? Impossibly stupid thought from a jumbled sick sleeping mind: he always seem a frail ghost after his wife died, hobbling through the 80s, fighting against the wind. He would, could, never have left these shores for the west – he spent too long in the east when he was young. And I never usually dream I have a girl’s body, or that I am happy, much as I yearn that my subconscious would take me there. Why now? Darkness and loss and the stupid randomness of my dreams descend and the pain of joy in my chest just turns into mundane familiar pain.

Continue reading

The UK Gender Recognition Act

(As promised at end of last entry… please bear in mind caveats there. It’s been a bad two weeks, so this may be incoherent even if dry. The worst of both worlds.)

public flogging

I won’t be surprised if most people reading this even in the UK haven’t heard of the Gender Recognition Act, which came into force on 4th April. It might come as a shock, against the background of current regressive steps on civil liberties seemingly happening all over the place, that somewhere a pen slipped in Parliament, and they’ve brought in a relatively enlightened piece of legislation; or depending on your viewpoint, that they’ve opened the floodgates to gay marriage, open group sex in Trafalgar Square, the public flogging of bishops and the complete disintegration of the social fabric of Britain as we know it.

I’ve tried to plod through the legislation out of interest, but seemingly continuous exhaustion prevents me from understanding all the wherebys and heretofores. For those with more keenly interconnected neurons, it’s here, although you may want to postpone reading them for now:

The Act
Explanatory Notes

As in all great British institutions, the Explanatory Notes of course require explanatory notes, so a website has been set up to explain them. There are other third party sites explaining it too, like GRA-info.

The Act has been plodding on quietly through the Lords and the Commons since November 2003 (see that link for the archaic way these things happen), provoked by an event in July 2002 when the European Court of Human Rights found that the UK had acted illegally in two cases concerning discrimination against post-operative transsexual people, which implied they should have the right to change their “sex” on their birth certificates, with all the consequences this would bring (positive and negative) in terms of retirement ages, who they can marry, etc. etc.

What I wanted to talk about, if I’ve understood the Act right, is how silly it is in many ways. And also to (shhh) keep quiet about it, because passing this kind of silliness is a big step-forward anyway. I don’t want anyone to think I’m against it please! It’s a great step forward. The paradox though is that, having passed it, it’ll probably be revised drastically as a stepping stone to more sensible thinking on gender and biological sex, and maybe even same-sex unions. The latter of course is just what the extreme conservative elements fear, the left say “nonsense” to, and Blair denies they are even thinking about; but when you start to think hard about sex vs. gender, you can see the conservatives may well be right. Good-o!

First, a brief summary of the Act, as I understand it. I may be horribly wrong in aspects of it, as I don’t have anything approaching a legal brain, so please correct me if you do.

The basics: anyone can gain a “gender recognition certificate” which gives them the full national rights of their “acquired gender” if a panel agrees that the applicant:

* has, or has had, gender dysphoria,
* has lived in the acquired gender throughout the preceding two years, and
* intends to continue to live in the acquired gender until death.

“Dysphoria” is just an ugly way to make being transgendered sound weird and medical. On recognition, the applicant is entitled to a new birth certificate reflecting the acquired gender and can marry someone of the opposite gender to his or her acquired gender.
Previously, birth certificates were immutable, and although you could change some legal documents, this was skin deep as you couldn’t marry someone of the opposite gender to you. You were forced into gay marriages by the state.

There are all sorts of qualifications, such as a limit on applications in the first 6 months (to keep the admin down), what happens to someone who’s already married to someone of their own acquired gender, sub-sub-paragraphs about state pensions etc.

Clanger

To me the Act is packed with interesting anomalies, which reveal the underlying confusions over gender and biological sex in our culture: it’s of great academic interest to me to see what happens now this step’s been taken and the realisation dawns. I’ll try and explain some of the clangers I think I see, but please bear in mind I’m not criticising the Act’s existence. I’m all for it: I just think it’s the tip of a cultural iceberg.

First point of great interest to note: although the panel assessing applications requires “either a medical practitioner or a chartered psychologist”, it is not a requirement that you’ve had any surgery for a successful application. It will of course help, but you just have to prove you’ve been living in your “acquired gender” for a specific period of time. This is a surprise to me, where most other countries would require your genitals to be a particular shape to allow you to be legally treated as that gender. I’m not sure whether this is just a kind of oversight, or consciously enlightened and a recognition of the difference between gender and biological sex.

Secondly, “acquired gender”? I’d like to see someone “acquire” a gender – it’s not like you can pop into Woolies and buy one – again I’d argue this is a confusion between gender identity and role, but we’ll allow an implied “role” here. If we do though, are we back to the pre-feminist days of requiring people to act a certain way in order to be considered a woman (or a man)? Wearing heels or chopping wood? Hmm. Maybe we should legislate that every woman found doing a course in car mechanics is transferred to male legal status, pension rights, etc.?

little black dress

Thirdly, I considered all this academic to me at first, as the Act would be for those who have undergone surgery, and I’m sure it still is largely, but it does make me think fancifully “could I apply one day?”. Almost for fun. I certainly satisfy criterion (1) above, and how do they define “living in my acquired gender”? Almost everyone who is close to me, and most people who just know me know my gender self-identification: that I am, and ask to be treated as a she. Most of the other she’s I know wear the same clothes as me: usually jeans. Does the Act require that, say, once a week you slip into a little black dress and go clubbing? I’m referred to as female by almost everyone I know, albeit that my life is largely online or conducted by email right now. I am called something that is largely recognised as a female name: and what if I was called “Robin” or “Alex” from birth, or some other non-gender specific name? Would that constitute “proof” or would I have to change it to another female-sounding name?. My mother’s middle name was one generally recognised as a boy’s name – could she have just adopted it into more general use and successfully applied? This page on GRA-info explains the “evidence” required a bit better than the official documents, indicating that I’d need to prove a “transition date”, but implies I’d really just have to show that I’m paying phone bills with a female-sounding name, and the word “transition” implies it would have to be different from my birth name. Which is all a bit odd if you have a non-specifically gendered name at birth. In fact, non-transpeople (in the UK) aren’t required to have names that fit a gender map, but transpeople are? Am I being picky?

I certainly intend to live the rest of my life this way, satisfying criterion (3). So all I’d need to do is ring the phone company, and tell the few remaining people in my life who haven’t visited this weblog yet? Or would a government official need to follow me round Boots with a clipboard to check I’m wearing lipstick?

Fourthly, the right to marry someone who is not your own gender is a very sensible and natural right, if you like marriage, or at least the right to be given the same social status in a partnership as any other woman or man. But doesn’t this make you feel that the whole heterosexual marriage ethos is creaking at the edges? Not because transwomen are any less women than others, but, what was going on before the Act? Transwomen could only marry other women. And now, if they apply, they can marry men and are forbidden to marry women! And what if two transwomen want to marry? Why, all they have to do is only one of them apply under the Act! What will they do to protect same-sex marriage from mockery, legislate that all transpeople have to apply under the Act, whether they want to or not so that the State doesn’t condone a gay marriage by mistake. There are probably tens of thousands of gay marriages carrying on now in Britain undetected as we speak between transpeople and others – we must stop this evil!

I’m sorry to sound flippant, but for me it does make a mockery of the whole state and church-sanctified same-sex marriage malarkey. Maybe it’s just me. But it doesn’t make any sense, if the state is suddenly going to start accepting transsexual people in the gender they say they are, if they still allow them to marry people of the same gender should they deceitfully not apply under the Act and declare their true gender. Of course, what I’m really saying is not that there’s an underground transgendered menace in the country (even though there is, evil laugh etc.) but that it’s ridiculous to sanction unions based on gender, or biological sex, or a misunderstood mess of the two things. Or indeed in other areas. Do they really want male-gendered minds in female prisons? Or is it only genitals that matter? And what about in loos? I could go on, but… won’t. I’ll let someone else do it for me.

church in a vice

A quick diversion to look how caringly parts of the church are taking this. I feel bad about raising this, as I dearly love some churchgoers and don’t for a second think they feel the following way. But take a look at the self-appointed Christian Institute site which concentrates its analysis of how wicked the Act is based on spreading fears that (a) church leaders may be fined if they disclose transgendered people’s identity and (b) (seriously) that old ladies don’t want to meet those horrid transgendered freaks in the little girls’ room. They call this a fight for “religious liberties”. With a special gift for missing about 20 points at the same time, they go to great lengths to say how kind christians should be to intersex people, just so that they can diss the transgendered, by pointing out they are not the same (duh) and say how immoral it is to “deform and damage a healthy body”, which would presumably stretch to people who remove non-malignant moles or get their hair cut. They say point-blank that people who have ops have a “disordered or unhealthy mind”. See the “Helpful Notes” page, first document. In the second document, they show the church in a vice, drag up the usual dross about “some people regret sex changes”, spread a little fear about the church being fined and meeting “them” in the loo, and refer to transwomen as “he” throughout. In the final document on that page, they display staggering and desperate hate-speech by referring to a transwoman and her partner with the caption “These Men Want To Marry” and say it would be a offence against “public decency” to allow a transwoman into a female-designated church activity. In a fabulous set of faux-pas, they seem to entirely miss the point that the Act does not require surgery, and thus people like me presumably aren’t committing some mortal sin unless we clip our toenails. It also omits to mention transmen, presumably because the scare tactic isn’t as high.

thesemen

It comes as no surprise having looked at the registered address of this Institute that the feverishly anti-gay pro-creationist anti-pluralist Rev David Holloway from Jesmond, Newcastle-Upon-Tyne pops up in these leaflets, a man who signed his name on a letter by a Dean Jensen claiming he “did not call Rowan Williams a prostitute; I did not refer to him by name or by title”, which sounds a bit to me like claiming you didn’t call your sister a fat cow because you didn’t use her actual name. Instead of contemplating his mean pinched little face any longer, I’ll return to my main theme: but hope, and would be delighted to hear, that other parts of the church have a more enlightened and less doomed-to-failure approach. The Bill’s been passed and the Act’s in place! Update your webpages and get over it!

So finally, a quick look at birth certificates themselves. A large part of the struggle for this Act in the last decade or two has centred around the wish to change birth certificates, specifically the box ticked when a child is born for “sex”. Prior to 1969 you said “boy” or “girl”, after then “female” or “male”. Does this mean “biological sex at birth” (it is a birth certificate after all). If so, does it make sense to change it later? Or is the Act recognising that it really is a gender box? Or is it just a bad patch up to give transpeople the rights they deserve according to their gender which depend upon birth certificate, but shouldn’t?

If it’s acknowledged somewhere that it means “biological sex at birth”, then I guess I don’t mind mine staying “M”. If it means gender, then I do, because they guessed wrong. If I had surgery, I still can’t see in theory that I’d need to change it from my birth biological sex (although of course if certain rights depended on it, I’d want to). And if I were intersex, I’d want it to have a M/F, or a star in it. Preferably gold for “special”.

A “gender” and a “sex” box would make it nice and clear, but then you’d have to fill the gender box in later, which is pretty silly for a birth certificate. A continuous “life” certificate would make a lot more sense, which gave people access to certain rights, if we have to differentiate rights based on gender identity or body differences at all.

Or of course, there could just be a jeebo box.

A princess wishes she were a frog

red-eyed-treefrog.jpg

OK, so. I’m spending my days with my laptop gently, or fiecely, warming my lap, in bed most of the time, wondering what happens next. I guess this doesn’t occur to treefrogs in the Amazonian rainforest, as something always does happen next: either they mate, swallow, or get swallowed, and it all happens very quickly. Hopefully they don’t anticipate all the time, worrying their little froggy nights away about the greater amazonian treefrog-eater, like humans do.

But what does happen next? I’ve had this crashing relapse since July, with some space inbetween where I hoped it was just the usual type of CFS/ME relapse I have, where I recover after a week or two, or at worse, a month or three, and suddenly the chequered flag for Easter flies by and it shocks me to the core. July to Easter, and well, let’s be honest: the best you can say is that I might not be worse. Some people with M.E. follow a gently ascending arc, like a coughing firework: from the shock of first illness, which on later reflection seems mild, returning to work (because we all work), and from thereon arcing downwards, fighting to stay in work to the exclusion of doing anything but lying down in the evenings and at weekends, and eventually splutter their fire out and fall to ground. Others burn their fierce illness brightly from the start, in hospitals, with a cluster of excited physicians all looking for an interesting organic agent, finding none and dispersing to more journal-friendly fodder: these bright catherine wheels of illness often seem to improve dramatically after a year or so, while the arcing rockets just keep getting worse. Oh to be a damp squib.

fireworks-small.jpg

I always thought I was the third kind: the kind who just stay the same. We get ill, we read some of the terrible fight those with shattering disability have, we shake our heads at what we think of as their bravery at fighting the terrible politics of just trying to get well, later realising that a fly in a web isn’t brave for struggling, just desperate. And we drag ourselves through our well-paid jobs, smiling to colleagues reassuringly, and agonise when we are too ill to be there. We can’t do much when not at work, but this is the price we pay to stumble on: and between rare relapses, we get through well enough. I thought I’d stay that way.

But July to Easter is a long time. I’m suddenly feeling less like an inhabitant of the last paragraph, where I lived for 11 years, and more like the arcing dying firework. My dearest friend with M.E. assures me valiantly I will get better: she has been through this before: years-long relapses with no end in sight, which do end. And she keeps assuring me over and over, which helps everytime – I need telling, because my mind tells me otherwise. She also recognises so well this thing I call “relapses within relapses” – what seem like horrible dives in health, like an attack of heavy flu, within the major picture of 6-month decline, that I’m going through right now every week or so. But I keep contemplating what happens next if my body continues this arc. And the scary answer is presumably: nothing.

We’re all trained to think of every minute as sacred: every stupid film from Hollywood demands we make the most of every second of our lives and “potential”. We’re exhorted to “live every day as if it were you last” – either Marcus Aurelius or St Patrick, or some such irritating extrovert said that. As if I’m not doing that now, pondering that idea every hour, and as if the thought does anything but render me incapable of all action. There are people chronically ill all over the world, with lives stretching ahead of them, with literally nothing on the horizon – I don’t think I could have imagined this a year ago. If I lose work, along with what I’ve seemingly lost already, my ability to go anywhere: holidays, friends’ houses, cinemas or shops; and if along with that I lose my ability to listen to conversation, music or TV through hearing loss, and I don’t have the strength or concentration to often pick up a book: what is left? What happens next? The lack of hope for the usual landmarks of an everyday life that others possess, simply because they are impossible for me: meeting a new friend in town, having children, a concert, a holiday, a walk on a beach and a drunken sprawl of an evening with friends. How do they carry on, those with no future hopes or dreams, no consolation of a small future event or even the tiniest plans to meet someone for a coffee? The dread thought that this, what I have here now, is all there might be until I die. And the fear that you can’t talk about it, as it just understandably alienates others more, and I mustn’t, mustn’t keep going on about this to others.

Other than my partner, I don’t see anyone in the flesh but a single friend now, who keeps me going by bullying me into accepting her invitations to come round here and make me watch DVDs with her when I’m not too ill. It’s a shock to realise I hardly know anyone else here. I’ve suddenly found myself in a cold northern city with no scaffolding of people around me to prop me up now my masonry’s crumbling. Gender presentation fears made me scatter the pieces myself, or not collect the people who could be here now: fear of self-reflection and what others think of me – flesh being my curse as well as saviour, because I so need friends. I’m still doing the same even now. Reaction to my dreadful mail was full of kindness and sympathy mostly, but people have their own lives to shine brightly in. Most of the few miracles that resulted from that mail are fading, and I’m not going to chase them: there’s no sadder sight than someone desperately clinging to miraculous hope like a bereaved widow, while all around shake their heads at her decline of rationality.

So, what if I stay ill, as I have more or less constantly from July to April, for the rest of my life? I have to look through a glass darkly here, to not get the same shock next Easter, Christmas, next signpost to loss. Presumably:

I won’t see that many more people aside from the occasional doctor, nurse, postman;
I won’t make new meaningful, lasting friends, at least who I can actually meet;
I’ll lose my job in some painful, drawn-out process, and stay without work;
I’ll have to learn how to fight for benefits while deadly ill, like everyone else with this illness always had to;
I’ll struggle for motivation and strength to get up, lose my skills I had to work;
I’ll fight, or not fight, my own weakening ability to keep myself going mentally, emotionally, and can only presume the wolves of anxiety and depression will bite harder as they sense blood and guilt;
Nothing much more will happen: big life events will be something I won’t have.

A list like my last one: my fears. I must make another: what might happen:

My drastic drop in health will start, imperceptibly at first, to lift; one morning I’ll wake up and think: this is new;
With it, my anxiety will ease: a drug will work, or my mind will find a straw that holds fast, or the illness will lose grip of the foul chemical tricks it plays on my brain;
It’ll be in time to return to work, and my job won’t have been radically and terrifying changed by the powers that be;
I’ll regain my equilibrium in illness, balancing mind and body, and return to the game of work and rest;
I may be able to mix some play back in with my rest when not at work;
I’ll find some determination to make new, physical friends in this emotional dead fish of a city: selfishly, people who might still like me when I’m ill, and might want to watch TV with me even when I’m sick;
I’ll be where I was a year ago – again.

There’s another theoretical list floating around in the ether too: one which doesn’t involve a return to where I was. Books on M.E. currently preach this thought as a sin which will keep you ill: hope not for the past, build a new life – implicitly, with lower expectations. But joy in a raindrop or an opening flower never worked for me when my brain and body were being torn to shreds by illness and fear. I can’t just watch time passing by. Because I know, that when time’s passed, it doesn’t come round again: everything past is irretrievably lost. Books terrify me, films terrify me: people preaching that a minute wasted is lost forever. It’s like a slap in the face, everytime I hear such sentiments tripped out at the denouement of some film, scribbled by some spoilt script-writer who’s found themselves through what they think of as a tortuous life experience, and urges us all to live our lives to the fullest – if I could get out of bed, I might be able to try. We only live so many heartbeats; do I have to live most of mine out missing people around me, staring into a dark bedroom, living on a diet of no sugar, no dairy, no wheat, wincing at the sound of trash TV rattling a damaged cochlea, or agonising about a future meeting with an old friend or family member who may hate having to pretend they think of me in the gender I tell them I am?

fortuna.-purple.gif

My thought-savers for the day must be: that I still can get online, and that I know some people who still care, want, to talk to me there; that I am good at summoning up an appearance of zest and vitality online at least to stay within some small communities and not be seen as a case for charity (I hope); and that many people with the most appalling CFS/ME are, by their own reports, untouched by anxiety and depression, and by and large seem full of hope, even as their bodies drive them into the ground. So maybe if I can find a way to outrun the wolves, and a way to fight back decades of fear and shame about my true gender and be who I am with help from a few others, I can cope with the illness and loss? As to St Patrick and Hollywood Endings: maybe instead I should rather listen to Boethius, in prison for treason, after a life of renown, riches and happiness, whose Consolation is the impersonal nature of fortune, pictured as a great wheel:

Inconstancy is my very essence; it is the game I never cease to play as I turn my wheel in its ever changing circle, filled with joy as I bring the top to the bottom and the bottom to the top. Yes, rise up on my wheel if you like, but don’t count it an injury when by the same token you begin to fall, as the rules of the game will require.

Or maybe I should return to Taoism for another look:

Do you have the patience to wait
till your mud settles and the water is clear?
Can you remain unmoving
till the right action arises by itself?

enlargement of tao te ching.jpg

This entry is one of shameful self-pity: one which may add to the guilt and fear, and drive those who are still near enough to hear me a bit further away. I promise you it’s been hotly debated internally whether I should post this, or anything as honest and raw again, because of this danger: this weblog’s at high risk of survival right now. My next entry will (will) be academic and dry, or light and breezy. But if I have only so many heartbeats, how else can I spend them, and still be true to the beating of my heart, without telling?

Fears


Why am I so ill now?

Because I am suffering from a somatic disorder where I perpetuate my own beliefs about illness
Because I took 10 years’ of antibiotics when I was young
Because I am depressed
Because I have anxiety disorder
Because I internalised my parents fighting, manufacturing illness
Because I have an poorly-understood organic disease called CFS/M.E.
Because I am on too many drugs for anxiety and sleeplessness
Because God is punishing me
Because I am having codeine withdrawal
Because the universe likes to experiment on people
Because the medical diet I am on is making me iller
Because I am perpetuating my own anxiety as illness myth
Because I am suffering from chronic lack of stage four sleep
Because I have subconscious reasons to gain from remaining ill
Because I was bitten by a tick and have unrecognised Lyme disease
Because I grew up transgendered, and my unhappiness results in physical symptoms
Because I am self-pitying
Because I have an undetected illness such as MS
Because I am chronically lonely through lack of social interaction
Because my anxiety about my hearing loss has driven me to self-isolation
Because I am a weak person
Because I have hidden mercury poisoning
Because some people are not built to survive, and current society prolongs their existence artificially
Because I have a brain tumour
Because I lack courage
Because I am a bad person, and am being paid back for it
Because I have chronic candida which is affecting my whole immune system
Because I have no courage to lift myself out of this state
Because I have hidden severe allergies
Because my unhappy childhood set my brain and body on a course of self-hurt
Because I have an as-yet misunderstood immune system dysfunction
Because I am a scientific experiment in a simulated world
Because some things are supposed to be
Because I won’t get out of bed, rather than can’t
Because my mother passed on a polio-type illness she contracted to me via the womb
Because there are no reasons, and the universe is unkind and unknowing
Because I sleep outside my natural circadian rhythm of daylight and nighttime
Because I deserve it
Because I ask questions like this, while so many are so much iller, more unhappy, more anxious

darkness

Billy Whizz

Billy Whizz

Short post. I’ve been unable to frame an entry here ever since it came home to me how impersonal this weblog’s become. I don’t talk about how ill I continue to be, or how very anxious I am so much of the time, or terribly unhappy with regards to my gender presentation, and it’s dishonest (to myself, I guess?). Instead I’ve been coming across as some confident gender warrior with a scheme when I am schemeless, or political campaigner in a mask, when really I’m clueless what I can do to arrest the decline of real science in the medicine of M.E. in the UK. I’ll try and reframe myself and this weblog when I can see through the current fog of anxiety and self-disbelief and unhappiness, and I get a bit weller again. What must be hardest for those who know me must be the constant ringing of changes. Online, you can often present as cheerful for as long as you can type, and you can avoid dwelling on your disastrous mood or fears if you can type quickly: and when the physical or anxiety crash comes you can scoot off. But things really are very much as they were when I typed out the email that really started this.

Minnie The Minx

In the meantime I’ll have to make do with others’ words as clothes which fit well enough. I was never so much of a Billy Whizz – never the racing do-it-all – but I think with hindsight my mind’s been furiously and secretly playing several tracks internally at the same time since I was very young: learning to present the wrong gender to fit in even from before you learn what “gender” means. Same Whizz, different source. Minnie the Minx pretending to be a Billy Whizz. Or a family of Billy Whizz, Soppy Susan and Fatty Fudge (a not entirely fair way of finding out if my brothers are reading this).

So the following article expresses my current situation well: self-doubt, and the difficulty for those around you to understand the changeability and nature of this illness – thank you Jane. I’ll reprint it below under “Continue Reading”, but for those who want to read related comments, which stray back into the dreadful and worsening UK politics of “treatment” just now, the original article is here: Is it M.E. or is it me?

Continue reading

Two Turned Tables

Two reversals, one concerning illness, one gender, and ending up with a plate of baked beans.

1. The Liverpool ME/CFS service: an apology


First item concerns one of the highly disturbing job adverts for the new UK CFS/ME centres I included excerpts from halfway down this entry.

Many ME/CFS sufferers will know that a recent job description for trainee CFS therapists in Liverpool has caused distress and offence to patients. It contained information stating that therapists might be exposed to verbal aggression from ‘some clients with CFS’. As the Clinical Lead ultimately responsible for the job description I apologise unreservedly for this statement (though I was not aware of the wording until after the document had been released). Although incidents of this nature are very rare in any patient group, some might think it fair to mention their possibility to trainees joining
a therapy service for the first time. Nevertheless, the explicit reference to verbal aggression in the context of ME/CFS was bound to be seen by the patient community as an assault on their integrity. The suggestion that there might be at any stage a breakdown in trust within the client-therapist relationship was deeply destructive and in no way reflects the true ethos of the ME/CFS service either locally or nationally. If there were any point in raising the issue of inter-personal difficulties, it would be to ensure that trainee therapists have insight into their own limitations and can recognise and ameliorate any signs of overwhelming distress in their clients. The job description has been withdrawn, and in due course will be re-written with advice from patient representatives, emphasising the collaborative nature of the patient-therapist relationship. If this relationship can be further strengthened and developed, then perhaps some good will come from this unhappy episode.

The Liverpool ME/CFS team are passionate about their role in assisting patients recover from this destructive and neglected disease. Our main concern is that patients who might otherwise find our service helpful will now feel reluctant to use it. May we reassure all our clients, present and future, that we will continue to strive for the highest standards of care, and for the best possible relationships between staff and patients.

Dr. Fred Nye.
Clinical Champion, Liverpool ME/CFS Clinical Network Co-ordinating Centre

violent_lg.jpg

What I see in the apology above is a mealy-mouthed damage limitation exercise by someone trying to distance themselves from a PR mistake, rather than actually saying what was said in the job descriptions was wrong: it was “badly put”. The use of the adjective “distress” immediately puts us on a back foot as the meek, over-sensitive and tender ill, and why is he addressing us as patients? If you live in Liverpool, “potential patients” might just work; or “potentially less likely patients”. The “althoughs” and back-coverings in the mail are enough to convince me this is just PR. One can imagine what will be said behind closed doors to the interviewees about “the fuss” with the original job description, and how it just confirms the diagnosis of somatic disorder. I might sound a bit angry, bitter or sarcastic, for which I apologise, but really, this wind of change we’re catching sight of in the UK is simply terrifying.

I’d concur strongly with the opinions expressed in this mail to CO-CURE:

Could any “explanation” from Dr Nye be considered acceptable? No, of course not, because it is patently obvious what the mind set of Pauline Powell’s clinic is and that what is required are not “apologies” or “explanations” but a radical shift in attitude, and nothing less than a full investigation
into the model of care which has been adopted for this service and is in the process of being implemented – but not just in this clinic and in Epsom and St Helier, but throughout the rest of the country.

2. Julie Burchill vs. Germaine Greer


This one’s much more fickle and childish on my part. Germaine Greer and Julie Burchill have separately contributed in various ways to consistently encourage transphobia, try to place us in positions of public ridicule, and generally be plain nasty just to carve out their own careers.

A few examples. Julie first:

… And, yes, I know that they’re not the same, but may I say that I feel even less patience with transsexuals. Male to female transsexuals are Michael Jackson to the transvestites Ali G; not content even to dress up temporarily as the Other, they presume that its authenticity can be theirs through a few cosmetic adjustments.

… Transsexualism is, basically, just another, more drastic twist on the male menopause, which in turn is just another excuse for men to do as they please.

Queue up Germaine to join in the kicking:

… I should have said ‘You’re a man. The Female Eunuch has done less than nothing for you. Piss off.’ The transvestite (sic) held me in a rapist’s grip…. Knee-jerk etiquette demanded that I humour this gross parody of my sex by accepting him as female, even to the point of allowing him to come to the lavatory with me.

1971-May-7.jpg

She goes on in her book “The Whole Woman” (chapter: “Pantomime Dames”) to mock AIS intersex women as being “failed males”, saying that they should go be males instead of living as women. Further, she asks why no one asked ‘real’ women whether they accept trans-women as ‘one of them’, handing the keys to gender prison to those she deems fit.

Both miss entirely the irony that they, as feminists, are demanding of others a level of physical appearance in order to conform to their own stereotype of “woman”, which is what I’m sure they felt they were fighting against all the time; seem blissfully unaware that 50% of transpeople are male-bodied; and fall into classic essentialism by arguing that there is an “essential” woman’s experience, and policing it.

Julie Burchill is sometimes funny in a tabloid way when she’s not mocking minorities in danger of imminent physical threat.
Greer’s contributions a few decades ago to feminism seem to have wound down to snipey pieces on late night BBC2 and stomping out of reality TV shows saying she didn’t approve of them anyway (having taken the cheque). All’s the more pity because of their contributions in the 70s and 80s, to snappy punky journalism, and feminism in that order. Their fire went out, long-distance sight dimmed as it does with age, and they ended up joining the mob, I guess. One does wonder what their reactions would be to an article claiming some black people “weren’t really black”, using them for a bit of humour, and then suggesting that “real” black people should be asked permission for those concerned to identify as such.

Anyway the point of this is really just to be snippy. It’s nice to see Julie Burchill turning on Germaine Greer: “My feminist hero has become a rancid bore”; in which she accuses Germaine of being “offensive” amongst other things, which is a bit rich as it’s her own raison d’ĂȘtre.

If you want a quick dip into some intelligent dissection of Germaine’s flopsy philosophy on this, you might want to take a look at a short discussion on the livejournal transacademic group; for some more in-depth discussion, see: Gender Basics & Transgenderism (a third of the way down) by Lynn Conway, and some of the links above.

For a even more ridiculous position look no further than the Guardian yet again, to an article by Julie Bindel, trying rather desperately to fill Other Julie’s shoes in more ways than one. One wonders why The Guardian of all papers seem to be ploughing this furrow of transphobia with such determination. For commentary on this piece of nonsense, you could take a look at this discussion on Barbelith, and Charlotte Cooper’s article Oh Julie!, which is a more succinct summary than I could manage, drawing much the same conclusions I’d draw about Burchill and Greer’s flailing of wings:

But times are changing. I was a fledgling queer in the 80s when women like Bindel were lionised for their “uncompromising” tranny and bi-baiting dogma. Now, in 2004, it must be quite a shock to find out that they are no longer at the top of the lesbian food chain. They’re finding it out the hard way.

To top it off, the excellent Ms Cooper ends up trying to resolve the situation by challenging Ms Bindel to:

a public wrestling match. With me. In bikinis. In a gigantic tub of baked beans. You know I’ll win because I’m bigger and stronger than you and I can wrestle like a motherfucker.

Yay Charlotte!

BeansOnToast.jpg

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.

legolove.jpg

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.

bricktestamentsmall.png

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

poorhse300.gif

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.”