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.

Wolf Dread

I promised myself I wouldn’t put entries here that were just “I’m ill again”. So I guess I will write this as a draft, and then if it looks like anything one other person might want to read, I can publish. I’m getting very anxious again, the word I always use for something which is more like dread, very hard to explain, or a very silent kind of internal extreme panic. Dread is the best word for it: the feeling that at any moment, something terrible is going to happen which is finally going to bring the curtain down. I’m about to die, or find I have some terrible disease. L is about to disappear. The few strings I’m hanging off are about to break, or something, something is about to happen to finish everything off. I used to be anxious – everyone is of things they are scared of and have to do, or of things that may happen to them – but it’s just not the right word now. Like describing M.E. as Chronic Fatigue Syndrome: it’s hardly the point.
And I swear it’s a thing-in-itself – no matter how attached your panic seems to the given objects – it has a life of its own. Maybe it’s chemicals. M.E. eats your brain.
So I’m going to call it dread because it’s something I couldn’t explain now to my earlier self of 10 years ago, and that word’s the closest to it I can get. It’s something like an evil cake-mix of extreme anxiety, internal panic, and clinical depression which pops out when the panic’s briefly masked by something in the foreground – but all chilled in a fridge into a horrible stillness. It’s like someone your whole life is built around has just died, and you’re reeling and don’t know how to keep standing up, and your legs are giving way. But this is all so unsatisfying because it’s all figurative – I could stand now if I needed, if my soul could tell my mind to tell my body to do it; if the house was on fire, I guess I’d find out. All I know is that I had it from Boxing Day until the first week in January and it’s back. It creeps back up on you like a wolf, you can hear it padding towards you if you listen hard the day it comes back into your neighbourhood – that was yesterday. wolf.jpg Wolf Dread pads around you and tries to divert your attention from himself – whispers that you’re terrified of this, then that, any hooks he can find to divert your gaze to a passing object of fear rather than himself. So you think: “I’m scared that my right ear is going deaf, it just dipped in volume again, I’m sure”, and your heart races. You spend a few hours on that, then a few hours later, Wolf Dread’s whispering to you about how you’re never going to be well enough to get out the house again, and how the lovely ring of friends you once had don’t remember you much now, because let’s face it, you’re no fun anymore, you can’t post funnies to their mailing lists or go round and eat jelly with them, and who can blame them. You can’t go out to see them, and you’re teary on the phone, and who wants that for two years running? Then two hours later, Wolf D tells you that your heart’s racing and you feel sick and you can’t think straight because the one friend who still lives near you and visits is about to move away. Oh wait, no, it’s because you’re never going to be able to get back to work, your income will plummet, you’ll lose the house, your whole motivation to get out again, you won’t ever get another job, and with no sugar, wheat or dairy to eat, no friends, no music and no feeling of worth you’ll be dead in a year. Then he whispers that it might be a relief anyway, wouldn’t it? No-one lives forever. Apart from Wolf Dread.
When I was little, I had a repeated nightmare, which always ended vividly with a wolf walking up our driveway in my childhood home, opening his mouth, and swallowing me whole – at which point I awoke.
The problem with dealing with Wolf Dread is he doesn’t snarl, he doesn’t howl like wolves are supposed to, and he doesn’t even smell doggy. His plan is to get you to hang your dread on any hook you can find, and I have as many hooks as the entrance hall to a primary school. When he’s desperate and snarling for blood, and he’s so finished you off you’re wanting unconsciousness, he uses the last big hook: “you’re going to go into another month of dread and soon it’ll be all you are”. He makes you dread dread itself, because you know how it makes you feel and what destruction it does to the very things that might drag you out: people, enjoyment, peace.
All the panic disorder articles I’ve read tell me it’s all about this fear of fear, fear of pulse racing, fear of dizziness that sets up a vicious physical circle. But I don’t get this: I swear I don’t, so I can’t use these books. I can feel dread – it’s gnawing at me now – when my body’s completely quiet. I have awful self-inflicted shaming panic attacks, but that’s not Wolf Dread, that’s.. Squirrel Panic, and not a subject for today.
I don’t know where this dread is from: I don’t know why he picked on me. I can account for it logically with the build up of different predisposing factors from growing up as a little girl baffled to find herself in a boy’s school but not daring breathe a word, and instead ingesting it as guilt, from the disabilities and life-wrecking effects on any chance of a social life that a long-term chronic illness has (humans, like wolves, are social animals: he knows us well), from the partial or complete loss of the remaining source of joy – music – that my hearing loss is likely to bring. Or I can say it’s a chemical feature of the disease(s) I have. Or I can say it’s the months of Roaccutane I was put on a few months before I contracted the illness that switched on all my CFS/M.E. lights, 12 years ago. But in the end, I don’t know, and not knowing matters. It’s hard to explain this to people who say “live in the now, and deal with the now” – no, I need to know where to aim my glare, even if the object aimed at doesn’t flinch. Do wolves look away when you glare at them, like cats? I bet they attack.
Anyway, I heard him padding around me yesterday – you get attuned to his footfalls after a few years – and tried to dismiss it. Took some clonazepam. Last night, bad dreams, bad sleep. Today, mid-afternoon, rocketting panic based on a particular hook I hung it on, followed by generalised dread – now. My thoughts turn to this space. The only thing that’s seemed to make me feel better recently is typing here. Please, somehow, keep the wolf at bay – I can’t afford this to happen to me now, or to those I mail telling them I want to be gone – again – because it will make it even harder for them to stay my friend. And Wolfie knows that when I’m finally alone he has me completely his, and can gnaw at me with ease and at his leisure.

An Angel’s Map to the Human Heart

Today I started trying to write an introduction to this website, who I am and so on, and stumbled on the first sentence:

“The author of this website is a 30-something* person….”

* this statement released under the Artistic Licence

angel1.gif
I didn’t want to use the word “transgendered” in the first sentence – it’s not like that’s all I am. Nor is my whole identity “ill”, or “partially deaf” or “anxiety-disordered” – I have anxiety disorder, it isn’t me. I chewed my lip and cut and pasted a few times, and it slowly dawned on me that I couldn’t construct a sentence which didn’t refer to my gender in the first phrase, without it sounding unnaturally like I was spinning it out.
I’d wager that even those who profess to treat members of either gender more or less the same still tend to feel uncomfortable with “person”, expecting to see “woman”, “man” or similar very early in such an introduction, as if gender bores so deeply into us that we need to know it before we can even start to talk. We don’t require the same kind of read-out with regard to ethnicity, religion, and so on: you could happily get to know someone for years before realising their parents were Polish, for instance, and it wouldn’t (I don’t think) change your perception of them. Sexuality comes a little closer – you’d maybe expect to find out someone’s orientation within a month or two of knowing them, and in many cases in the first few seconds. Gender seems to be in some sense absolutely primary.
I’ve experienced this on IRC, by saying in previously unvisited channels (chatrooms) that I’d like to remain gender-neutral if that’s ok, partly to see what would happen and partly because I just wanted some rest from my internal gender wars. Excluding the “asl???” under-culture, even seemingly intelligent people seem to get at first amused, then faintly irritated, and in the finally stages (after say an hour or so, or two visits) either rude, as if you’re “fooling” them somehow (although they aren’t sure in which direction you’re fooling them or get fuzzy over in which way it’s dishonest to not declare your gender), or completely blank you (and make sure they tell you it’s because of your “game-playing” with gender before they do). I just can’t imagine the same reaction if, say, I declined to say if I was Caucasian, Afro-Caribbean or whatnot. The most well-natured tend to spend their time “guessing” at your gender, almost in what seems to be something like a flirtation to them, repeatedly and often in private, to the exclusion of all other types of interaction. They just can’t let go. They often assume you’re female, tell you you are(!) and that it’s ok, they will look after you if you feel intimidated or had a bad experience on IRC before. Gallant knights!
Although (ok), I was irritated as heck at the time by effectively being excluded from normal existence and becoming a cross between sideshow attraction and social leper, this isn’t really a criticism of their behaviour – well, apart from the patronising ones. I seem to naturally want to know others’ genders in the same way. On reflection it always seemed to me that these incidents just demonstrated something about the map of the human heart, how close to the centre-point each bit of our identity lies, and, probably in proportion, how much the hurt is if you’re misplaced, purposefully or through your own fear of identification (in my case) with something you think is shaming. The volume of pain due to the mismatch is of course dependent on circumstances too: ethnicity matters a lot to people where atrocity, race-hate or war have been involved; but it’s hard to imagine someone being (truly) emotionally hurt in more settled societies by their being assumed to be from a neighbouring city.
Moving closer to the centre of this identity map inside a human heart, being gay and not telling is a cause of great anguish to some, and immense relief once it’s just said and done; for others it’s of little consequence (I’m bi, but I often have to check myself before saying it without a preamble to some, because it seems so unremarkable to me now).
Sad Angel
But right near the bull’s eye, gender seems to lie. Attempted suicide rates for transsexuals are placed somewhere between 20% (Psychosocial characteristics of applicants evaluated for surgical gender reassignment. Arch Sex Behav 13: 269-276) and 80% (UK Parliament submission to the Joint Committee On Human Rights. Let’s ignore (can we?) those few left hobbling who would claim this is a tell-tale sign of mental disease, because they’re the same ones who talked about the mental disease “homosexuality” a few decades ago and proposed treatment, who say that Gulf War Victims are under some mass collective hypnosis of fictional illness, and who treated MS as a psychological problem between the wars. Being transgendered very often really hurts, unless you’re one of the lucky, brave ones who just say it out loud when you’re seven, like Ludovic in Ma Vie En Rose, who I guess stand a better chance. I can’t really explain to those who live permeated in the ether of a world naturally reacting in the correct way to their internal identity, just how many little hurts, hits and unintentional knocks a transgendered person has to smile through ever hour (knocks that aren’t really anyone’s fault) – well, not at least in this entry. Unlike Ludovic I didn’t tell anyone for decades, and there are still some that I’m only telling now with this weblog: all this for fear of what everyone would think of me. I’m still afraid of that, but I need to be one of the surviving ones (thus, this), particularly as I stand little chance of doing much about it because I’m ill, and not 18. But I suspect when the angels stand around in heaven flossing their teeth with their harp strings and puzzling over maps of the human heart, there’s a big big “G” at the centre: something the angels don’t understand, and might envy if they did.

Nothing is done without difficulty

I’m fumbling around in the dark, alright. It’s like I’m waiting for some starting pistol or something to start this journal off. I find myself often refreshing it to look for new content, as if little pixies will add entries overnight. Something to do with long-term involvement with running mailing lists, the lazy person’s blog where others make up all the content and you get the credit, and something to do with my ingrained need for others to help me right now, I suppose.
I’m very self-conscious about the heading up there, the quote from Saint Emily – not the kind of thing I would usually do more than sneer at, then feel a little sink in the heart about. I’m aware how it looks – like a “Kick Me” paper signed pinned to the back of your jacket as you walk into school – and there’s a fair to middling chance I’ll replace it soon, so in this light, I’ll reproduce it here:

Nothing is done without difficulty;
Face difficulties courageously and with humour;
Every life has its hardships and frustrations;
Courage is not only necessary for saints, it is necessary for any well lived life.
Saint Emily

The first thing I should say is that I don’t know which Saint Emily said it; there appear to be a couple of Saint Emily’s plus a Blessed Emily. I love how there’s a canonical list of saints – rather like Father Ted’s Canonical Priests List. The second thing I should say is that there’s a middling chance no Saint Emily actually said, as I found it tagged to a message on one of the Yahoo Groups for ME/CFS experimental research, looked it up, and only found a couple more references to it, from “Disability and Illness Quotes” pages, so it may be ecclesiastical myth. Oh and it’s attributed as a paraphrase; she probably said “cheer up, chuck” before toddling off to bingo.
It’s so un-me. Associating a quote like that with myself, even privately. Reading “Disability and Illness Quotes” pages. It all rings of flowers in an empty church hall, weak tea and – dare I say it – platitudes round a graveside to me. Very scary. And yet, when I read it for the first time, I guess in extremis as I am now, it struck me as maybe the only way through what’s happening to me now.
Everything’s changed for me in the last few months – it feels irretrievably, like light switches are being switched off round my body, slowly but surely, as a house says night night; or circuits blowing as the electricity grid shuts down across a city. When you’ve had CFS/M.E. for more than a decade, you distrust your body at every corner. When you’re transgendered, you add resigned, quiet hate to that at an early age. But at least with M.E. you aren’t habituated to think of bits of your body switching off forever: relapses ebb, remissions flow, and you ride on the wave when you can. But when, on top of all these decades of tightrope walking, something actually breaks – in my case my left ear – well for me it’s like the ground’s opened up. If my ear can go half-deaf, start ringing and clashing all day, and become suddenly so sensitive to sound that someone moving a plastic bag can make me feel like running to hide: if all this can happen in a moment, on a July day, when you’re doing ok, when you’re hanging onto work – and an ENT surgeon can declare it “severe and permanent” loss, and, after the requisite tests “idiopathic” – meaning we don’t know why and we’re not going to do anything about it – then what else might happen to my body tonight? Will it get worse? Will my other ear idiopathically break tonight and I’ll be plunged into the world of the deaf tomorrow?
I find it very hard to explain (my inner voice is saying “justify”) just why my world’s been shattered. Plenty of people are profoundly deaf, have chronic illnesses worse and more painful than mine, are deeply cut by gender issues, have to cope with terrifying grief and loss of those they love, have no money, no home, no hope. I can’t account for my own anxiety, depression, grief and deep swell of dread every day that I’ve had for 5 years now, and has suddenly accelerated into terror and a loss of (and loss of the wish for, coupled with a longing for) the outside world. Certainly what I’m experiencing isn’t the norm, and my dose of bad luck in the world isn’t quite average, but I feel an ache of guilt that I know others whose loss and pain on the face of it should be so much greater. I was going to describe the practical and shameful depths to which I’ve sunk in the last week here, but I think that’s enough wallowing for this entry. Think hippo, and replace mud-bath with self-pity and loathing.
phrenology.jpg
Personal “weakness” springs to mind as an explanation for my lack of courage, out of fashion as that notion is with therapists. Were I living in Victorian times, a phrenologist would I’m sure be feeling the topography of bumps on my head to look for signs of weakened hereditary faculties of courage. I hope I’m not just doing the same by appealing to “courage” as a possible way to keep surviving. I have never felt I had any. Is it something you can just have, or can get? I know if I do have any, it’s tucked away under the stairs, and has never seen the light of day.
At least I suppose I’ve found Esme (“ee”) Fumblings’ middle name now, if anyone remembers her: Emily. Esme Emily Fumblings. She’s no saint.

What Ho.

The point of philosophy is to start with something so simple as not to seem worth stating, and to end with something so paradoxical that no one will believe it.
Bertrand Russell

So difficult to start this. Feel the need to introduce everything I need to say for the new reader, then the lack of said reader’s desire to bother reading it, and finally the feeling that it’s “not to seem worth stating”. Throat infection for the last five days on top of all has thrown me into a very bad spin – been confined to bedroom for days, extreme anxiety and physical reaction. Like Nelson Mandela but without anyone calling for my release. Call for international sanctions against my illness presently looking unlikely. Airports being named after me highly improbable.
With hindsight, my hyperactive entries on Christmas Day were one of those little happier mountain peaks, only recognised later from the interminable dry valleys of ME/CFS. So for now I can just put up a couple of links that I am very anxious sound like extracts from Laura Ingalls’ diary, but are shorthand to try and explain some of the effects of chronic disease. You don’t have to read these.
http://www.foggyfriends.org/understandingme.htm
http://www.butyoudontlooksick.com/spoons.htm
http://www.hyperacusis.net/whatis.htm
Having said that, I’d quite like you to read them, if I’m honest.
Being transgendered and having anxiety disorder and clinical depression are not yet a feature of this weblog because I’m… too scared to talk about them yet. Someone might actually be reading this.
Incidentally, I’ve never actually read more than a few paragraphs of Bertrand Russell in one sitting. Bertram Wooster, yes.

Difference of sex no more we knew / Than our guardian angels do;

Today, just a hiatus for Christmas Day morning before we start this thing proper here. The most lovely thing anyone ever said, publically, that I knew was for me, privately.  A long time ago.

The Relic

When my grave is broke up again
Some second guest to entertain,
(For graves have learn’d that woman
head, To be to more than one a bed)
And he that digs it, spies
A bracelet of bright hair about the bone,
Will he not let’us alone,
And think that there a loving couple lies,
Who thought that this device might be some way
To make their souls, at the last busy day,
Meet at this grave, and make a little stay?
If this fall in a time, or land,
Where mis-devotion doth command,
Then he, that digs us up, will bring
Us to the bishop, and the king,
To make us relics; then
Thou shalt be a Mary Magdalen, and I
A something else thereby;
All women shall adore us, and some men;
And since at such time
miracles are sought, I would have that age by this paper taught
What miracles we harmless lovers wrought.
First, we lov’d well and faithfully,
Yet knew not what we lov’d, nor why;
Difference of sex no more we knew
Than our guardian angels do;
Coming and going, we
Perchance might kiss, but not between those meals;
Our hands ne’er touch’d the seals
Which nature, injur’d by late law, sets free;
These miracles we did, but now alas,
All measure, and all language, I should pass,
Should I tell what a miracle she was.
John Donne
(1572 – 1631)

Grep works.

I’m new at this, so forgive me if I’m sounding like a silver surfer who just discovered that ink cartridges cost more than the remarkably cheap printers they just bought, but lying in bed after only 4 hour’s sleep on Xmas morn, my hyper mind’s been currently obsessing on this: that writing a weblog’s making me think a lot about categorisation, and dangers of allowing post-hoc changes later. I suppose what librarians of the more ghastly kind who get fed up stacking shelves call “information choreography”. This is all rather beside the real point of this weblog, but think of it as laying out your pencils in a row before an exam I guess, and stretching your fingers before starting.
So don’t read this if you’re here to read about illness, gender or God. This is a sidenote, some chatter before I start.
It’s the post-hoc thing that concerns me most. You can’t reformat and recategorise paper diaries long after the ink’s dry, which may not be such a bad thing. On starting this thing, I’m tempted to create a lot of categories, and sub-categories, in which I can file entries multiply; so, say, this article might be filed under a master category “information”, a sub-category “technofear”, and also under another master category “blogging”. I might do this with a year’s worth of articles. Then one day I might feel that, given that I only have six articles under “technofear”, and the only ones I remember are about how people irrationally fear cloning, I’ll just rename the category “irrationality” and file it under a master category “belief”. Now, clearly I can review what’s in it, but you can imagine given a few permutations, it’ll get out of hand, beyond the pale and altogether not altogether.

Continue reading

Tapping the microphone…

Christmas Eve, 2004, and I start my conversations with myself (and anyone who wants to listen). Is this thing switched on?

As Dom Pedro listened to Bell recite Hamlet, Dom Pedro heard every word and exclaimed “My God, it talks!”



Standby.. transmissions will start shortly.
This weblog’s likely to be less fun than most. Be warned. You’re likely to see lots of this:





and some of this:





If you know me and see some things about me you didn’t know, please don’t feel you’re trespassing – I probably always wanted you to know, really, or at least it makes my life easier if i know you do. Even if you think it makes me rubbish.

Dylan Thomas – A Child’s Christmas in Wales – and a first Christmas Eve’s test of my weblog

One Christmas was so much like another, in those years around the sea-town corner now and out of all sound except the distant speaking of the voices I sometimes hear a moment before sleep, that I can never remember whether it snowed for six days and six nights when I was twelve or whether it snowed for twelve days and twelve nights when I was six.
All the Christmases roll down toward the two-tongued sea, like a cold and headlong moon bundling down the sky that was our street; and they stop at the rim of the ice-edged fish-freezing waves, and I plunge my hands in the snow and bring out whatever I can find. In goes my hand into that wool-white bell-tongued ball of holidays resting at the rim of the carol-singing sea, and out come Mrs. Prothero and the firemen.

Continue reading