Out of the swing of the sea

So, I did come down sick again: maybe some explanation for this swing down which is continuing. I’ll spare gruesome details, but it’s gastric and has been continuing for 3 days, so I’m losing yet more weight. And it may have been my own stupid fault. My new private Doctor who specialises in CFS/ME, Dr Myhill sent me a confection of minerals in powder form to dissolve in water (tastes like what I imagine washing up water tastes like: I haven’t tried), and, not finding the specified “scoop”, I thought “coffee scoops” and doled myself out a soup spoon full on Thursday, to immediate gastric reaction. I’m told my body may be in shock mode now. We found the scoop today at the bottom of the powder – it’s like a lilliputian’s teaspoon.
The result (if that’s the explanation) is feeling very sick, tired and anxious and stuck in bed. But I’ve had repeated gastric episodes of a yucky variety in the last six months: the first coinciding with my loss of hearing and cochlea damage. I hope it’s understandable that I’m anxious right now about more “idiopathic” damage and deafness, and doesn’t signal a descent into being yet more pathetic.
So this has to be a snatch of an entry, and I’ll use others to provide content. For those who don’t know the (agonising, ridiculous, soul-destroying) state of CFS/ME healthcare in the UK, which I’ll still have to put off for another time, please please just quickly look at my own private doctor’s take on the “organic illness vs. you’ve convinced yourself you’re ill” debate. I like a straight-talking doctor:

CFS Psychological or Physical?
This seemed such a stupid question that I never bothered to consider it.

Also her article on “Dealing with Doctors“:

Most doctors do not distinguish, indeed do not want to distinguish, between fatigue, frustration, sadness and depression. If you burst into tears with frustration at the total lack of understanding, that merely reinforces the universal diagnosis of depression.

Because of her attitude, I’m sticking with her methods for at least 6-9 months. She’s a breath of fresh air, after more than a decade of UK doctors looking like a deer in headlights when you mention M.E. She’s very nutrition-based, but she’s also ordered a lot of tests (vitamin D deficiency for mood problems, melatonin levels, parasitology, and something scary in case my hearing loss was a tiny stroke, and a third thyroid test) which the NHS have told me they won’t pay for – so I have to. I’ll be taking vitamin B12 shots weekly soon, which is first-aid commonplace treatment in other countries for this condition, and unspeakably unorthodox hippy nonsense to UK general practioners. Allow me a brief outburst.
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All of you are worthless physicians.
If you would only keep silent,
that would be your wisdom!
- Job 13

Joni Mitchell says it best in The Sire of Sorrow (Job’s Sad Song).
Anyway enough. I’m sitting in bed, trying to expose my ear to noise, as instructed, and trying not to worry. Two lovely friends held back the borders of my anxiety yesterday by just talking to me on the internet. Thank you thank you.
I’ll have to stop, as rest for CFS/ME patients is supposed to not involve laptops, TVs or even music but, just for me, another song of longing based on verse from a long time ago, from a band who have saved me time and time again. Just a deep deep longing to be out of the “swing of the sea” for a little, to get some rest, physically and emotionally.

I have desired to go,
oh I have asked to go
where a few lilies blow,
to fields where flies
no sharp and sided hail
and springs not fail,
and springs not fail.

And I have asked to be,
oh I have asked to be
out of the swing of the sea,
where the green swell
is in the heavens dumb,
and no storms come,
and no storms come.

- The Innocence Mission – No Storms Come – from Gerard Manley Hopkins – Heaven Haven

And finally, Hope’s lesson for Giant Despair.

And let us consider, again, that all the law is not in the hand of Giant Despair. Others, so far as I can understand, have been taken by him, as well as we; and yet have escaped out of his hand.
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Who knows, but the God that made the world may cause that Giant Despair may die? or that, at some time or other, he may forget to lock us in? or that he may, in a short time, have another of his fits before us, and may lose the use of his limbs? and if ever that should come to pass again, for my part, I am resolved to pluck up the heart of a man, and to try my utmost to get from under his hand.
I was a fool that I did not try to do it before; but, however, my brother, let us be patient, and endure a while. The time may come that may give us a happy release; but let us not be our own murderers. With these words Hopeful at present did moderate the mind of his brother; so they continued together (in the dark) that day, in their sad and doleful condition.

Hopeful comforts Christian – from The Pilgrim’s Progress

He’s back

Anxiety/panic and confusion over everything back very badly after an event two nights ago. Very hard to move or speak without hurting me or others, who understandably get frustrated, or talk coherently about what’s hurting. Wolf Dread came back and is baying for blood, taking snaps out of me. Thoughts of the most terrible outcomes and endings. Triggers; triggers, illness and sleeplessness. Stay in bed.
Maybe this is exhastion after staying up too late for too many nights talking to people who seem to have the key to my prison. What to do if you have to choose between fitness of mind and body? Maybe it’s an aftershock of a very quiet and lovely visit from friends yesterday, with no more exertion than sitting, watching TV, and talking – which means my life really is going to be very limited from now on; maybe it’s the 36 hours of anxiety over issues I can’t write about here. Maybe it’s illness: the distortional games CFS/M.E. likes to play on your brain chemicals, just for kicks. Or maybe it’s just how things are. But it’s so mean, after all the hope of the last week, and I feel it’s all my fault, for whatever reason I can find at the time.
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Fear of sounding like teenage goth, so won’t type much more. Maybe type on another dry topic later to try and sound literate and detached, to attempt some real mental detachment. Stephen Fry said once (I paraphrase) “if you want to be something else, you just have to keep pretending to be it, until it’s you”. But this is closer to real-me: when you see those entries, that’ll be journo-me.
I say closer because I wouldn’t want you to see me in the hateful flesh now: barely coherent. Senses gathered briefly when my hands touch the keyboard, and wildly reeling when the efforts over, rests between each sentence. Not nice to be with.
It’s very hard to be truthful like this with the world watching (where my world is a few people). Please forgive me for my choppy-changy moodswings, and what seems like self-indulgence. It may be so: it’s just that I can’t tell, and hurt too much just now to be able to find out, or really do anything. This entry is a limited edition 7″, and may disappear at any time, through sheer humiliation. Who wants to read this?
My uncle wrote to me unexpectedly yesterday – we haven’t talked for years. He’s really a second cousin, and the remaining link to my mum who’s gone (her cousin and childhood companion). I dream about telling her she had a daughter all this time, because I know she would have opened her arms to it. I hope he won’t mind me quoting his letter:

You are in dire straits, without much wriggle-room, though I guess loving outsiders, perplexed by their helplessness are reduced to affirming platitudes and detachable encouragements which presuppose a kind of freedom and energy available to them but not to you. What, where is the key?

“We think of the key, each in his prison
Thinking of the key, each confirms a prison.”

I think of what people do in prison. Immense numbers of press-ups. Messages tapped out on walls or pipes. Treatises written on bog-paper. The gratifying fantasies of revenge. Commonplace rotting. I also recall (from childhood) that Bunyan’s Giant Despair is given periodic fits (just as hope itself) so that in a brief lapse of his tyranny the victims find the key that was with them all along in the dungeon.

I guess you have to wriggle-wriggle with what you have available to you, not the contents of platitudes beyond your reach, disqualified by your reality. All the time the choice of life over death is set before us. In some prisons, wriggling may be the only affirmation of choice.

P.S. There is a moment in each day that Satan cannot reach – William Blake

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I dream of stumbling across some fragment of that gene of eloquence that he’s always possessed in some dusty attic of my mind one day. He probably won’t see this as I doubt he has internet connectivity these days – he prefers lonely estuaries to bustle – but his letter bears reading and re-reading for me. I don’t know if he’d be able to adjust to some of the revelations of this weblog, if he saw it. He once said to me with a huge air of sadness, when we discussed the loss of faith I, and he to a greater degree had suffered, that he was “last century’s man”. It was terrible to hear – his despair at the time. I hope he doesn’t think that still – he isn’t. Every century needs this kind of care and eloquence. I don’t talk to him enough, probably because I feel the weight of a childhood staring out of the wrong face at him, with the wrong assumptions coming back at me when I do, which is hardly his or anyone’s fault. Maybe this might change, if I tell him one day. Meanwhile, I’ll sit still, and wait for one of those lapses of tyranny. His Giant – my Wolf.

i’m fast asleep / my headphones / they saved my life

Sorry for no entries for days! Just about every two minutes or so I’ve contemplated a new entry, and contemplated how many of my massive readership I’m losing because it looks like another shipwrecked weblog. It’s not, I promise. Just that on reflection my last feverish entry (you have to get it out, waargh) may be a bit heavy for most, and unintelligible to a few. And a bit of a shock to some who know me. Sorry.
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This one will be about My Ears. I wanted really to say that if, as a few of you have written back to me, you have Ear Problems too, that private ENT doctors, whether you pay them or not, smell, and audiologists are wonderful, so go and find one. If you’re in the UK, you might be able to find one locally on the NHS. They don’t go through the same intense 5th year course in “Snootiness Skills” as doctors do, especially the kind who decide they’d like state-condoned backhanders from anxious people – I suppose you would expect that to be a natural selective factor for the kind who will go private. The NHS ENT doctors are, I expect, perfectly likable people with cats and unpretentious hobbies (I’m imagining fishing) and slightly shabby wallpaper that needs redoing but that somehow they won’t get around to fixing for years; the problem is, you don’t get to see them for 18 months even if you go deaf. For my international friends, this is called the “NHS waiting list”. The ones you therefore pay, if you can afford it, to see earlier than 2006 are ruthless, take your money and snap at you, and conduct a hearing test with transparent headphones, while rustling papers on their desk. They then tell you your hearing will not return, tell you not to think about it much, as they get your coat.
I’ve so lost faith in the health system here: I sometimes pine for America’s system, ruthless and nasty to those not in work as it sometimes seems. Selfishly, if I had insurance through a job or family would things be better there, specifically for M.E.? Would my doctor have correctly diagnosed my cochlea damage within the crucial 48 hours and got me to hyperbaric oxygen or steroids to fix my hearing loss? On all accounts the US is taking M.E. patients and the issue of the organic illness more seriously, and putting some real money into research instead of psychologising everything within sight. I’m sure I’ll write more later about the psychologising of organic illness in Europe in another rant similar to the last entry, along with psychologists doing the same to benign conditions like someone like me being a girl (which I don’t think is fatal). But not today: today it’s An Ode to Audiologists.
I don’t have much content here really, except that “my” audiologist (and it’s a sign of my renewed faith that I think of her as “mine”) didn’t give one itchy look as I talked to her for hours, took every question and silly comment I made seriously, my half-baked internet-derived notions with interest, never patronised, and never once gave me the impression she had any other appointments all day. Ironically, I had to pay to get the first appointment with her, so I could get it in days rather than weeks/months/years, but after that you just blend organically back into the NHS, and everything else is free. A tiny bit of me is beginning to revise my recent view that it was all an impossible pipe-dream in 1948.
So my audiologist laughed at the costly but pitiful child’s handwriting pencil-drawn hearing tests from my private ENT appointment with Mr Grumpy, and ordered some more – within a week. She took special account of my anxiety disorder and my lack of mobility due to M.E., and booked a time that was just right. The tests were long and carefully explained all the way through, and, suspicious as I am of my own mind’s ability to fiddle any test to make my ear seem better, I was shown that they were accurate by post-testing demonstration. I really could hear the tones I “caught a whisper of and hoped I could really hear”, and my hearing really was gone where I thought it was. She was very patient and so sweet with me. And the results were so encouraging.
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The results: I have a dip in my left ear starting at 2000Hz, dipping down (I think?) 40dB at 4000Hz-6000Hz and then for some weird reason spiking right back up at 8000Hz, which is the end of the graph. There’s a bit of low frequency hearing loss in my right ear, but nothing to get excited about. The hand-scrawled Rhoobarb-and-Custard profile of my hearing from my private ENT consultant (who’s probably now spending my fee on new golf clubs) said my hearing dived at 1000Hz and never returned, and was “profound”. So, either someone is affecting a miracle the ENT doc assured me “couldn’t happen”, or he just didn’t bother properly, and wanted to get home for his egg and chips. I think the latter.
So I do have some serious hearing loss, to go along with my M.E./anxiety/depression salad, but it’s not quite as profound as it looked. It feels bad, but my audiologist put to me an unpatronising argument that a lot of it is to do with brain-stem pattern recognition (note the difference between this and psychologising the problem: “you just aren’t thinking right, loser”). I’m still terrified whatever virus did it to me will do it to me again in the other ear, but more hearing tests might chide me to not be so scared in due course, and I’m meanwhile having some parasitology and vascular tests to rule out anything nasty, like a minor stroke – enough to keep my worry atoms functioning. The existing loss is where humans make, I think they’re called fricative sounds or sibbilants, and I know someone who could tell me if she’s reading this! Lip sounds, B’s and F’s and S’s. And I do have quite bad tinnitus, which is varying at the moment from a loud squeal/clang some days (like today) to more mild whooshes other days that I hardly notice for hours on end. And my most serious problem currently, the hyperacusis (sensitivity – ouch – to high frequency sounds and an inability to get the TV to a volume where I can both hear it and not hurt), the audiologist says is likely to be treatable. I believe her. I like her. How people are as people matters more than what they think they know, or how long they were trained to know it.
So this week sometime I’m getting a little plug to put in my ear, which will whoosh white noise at me. I’m supposed to wear it 8 hours a day, probably for a long time. It’s supposed to be pleasant, not unpleasant, and a relief from the spiky noises. And it’s free, part of Tinnitus Retraining Therapy, and I think they cost people $2000 in the US. Maybe there’s some reason to still remain here. If you come across me sometime, if I get better and out of this living room, and see a little plastic thing in my ear, don’t perform the aural Heimlich Manoeuvre on me, please.
So, getting to my point, which is like getting to the end of one of Escher’s staircases, losing my hearing has been a night-terror to me for months. I always said all that was important in life was “friends and music”, and I’ve lost many of the former through this rotten disease, and my inability to cope with the gap between the girl inside and the boy on the outside, the worry of relating to others and what they’re thinking about me. Sending that mail a week ago is my way of working on that, and I’m currently back into miracle-recovery mode over my attitude there due to (particularly) a few responses from people who have oceans inside them. As to the latter, it’s a terrifying thing to think I might lose music – truly not-worth-living feeling for the first few weeks of anxiety, after the deathly predictions of the ENT doctor. This won’t make any sense to someone who listens to the odd “Classical Relaxation” CD on the way home from work I know, just as I also won’t understand your fascination for clay-pigeon shooting – but that’s ok. Just assume for a second it’s like a death sentence to me. I usually can’t concentrate on conversation when some music I love is on – I can’t think straight, I get the most wonderful dizziness and I’m lost in it. I swear I could get lost in a city listening to Ennio Morricone’s Metti Una Sera A Cena, which deserves its own entry here.
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So the point is: I’ve joined audioscrobbler.com, wired it into how I listen to music at home, and spent ages writing the simplest tiny php script (of which I know nothing – I’m a web-ignorant benny) to pull in live information to show what I’m currently listening to on the side panel of this weblog right now. You can also see my profiles at audioscrobbler and last.fm, should you be as bored as a melon. The “What’s Playing Now” thing apparently fades quickly, so might only show if I’ve been listening to music today: it depends on how many friends you have, and I don’t have many. Apart from you, dear readers, who if you audioscrobble I would implore to befriend me.
This is the thing: that doing this was scary for me. It probably won’t seem scary to you, or the list of what I’m listening to interesting to read. It’s more like my way of casting a net. Three people have written to me in the last week saying they have hearing problems too, and I think at least one has said (bless you!) that your approach is to listen to as much, and do as much ear-y things you can before (or in case) your hearing goes forever. Mine’s always been the opposite – to give up and not scare yourself by pushing fate. So this is trying to reverse the trend – my headphones as an act of tiny tiny faith from someone who isn’t good at it.

Jerry Springer – The Nopera

The recent furor (read: minor fracas) in the UK over Jerry Springer – The Opera was largely aimed at two things – the number of swear words used – apparently an impressive 8000, although you have to remember “chick with a dick!” repeated by 27 cast members 5 times (as is opera’s annoying way) counts as 27×5, not 1; and secondly, at the portrayal of Christ as “a bit gay” and a bit daft. I didn’t get as far as the second half, as I found it all a bit annoying, so have no comment on the latter, and as to the former, well I like the odd swear word from time to time – the etymology of rudery is a fascinating thing particularly when the words so clearly come from Anglo-Saxon and were respectable back then (ref: shitten). I guess the Norman invaders in 1066 just wanted to make the natives look rude. The origin of the F-word (see, even I’m being coy for sensitive readers) to which I could devote a long entry remains shrouded in mystery and myth interestingly, but the parentage of most of the rest is pretty respectable, or at least charmingly onomatopoeiac.
No, the reason I didn’t take to JS – The Opera, was that I was disappointed in Stuart Lee, one of the co-writers and the erstwhile Lee and Herring and Fist of Fun Lee, who I quite liked because they were so childish (for international readers: british comedy duo of the 90s who repeatedly failed to get their series renewed by the BBC). Disappointed because, from the first half I saw, he didn’t really do anything but regurgitate the typical Jerry show in a supposedly ironic way. I suppose it’s not his job to challenge but merely to make some money, which he at last has seemed to manage to do, but he did seem to have some ability to dissect hypocrisy and go for the jugular. But the constant attacks on sometimes vulnerable transpeople that Jerry perpetuated like a circus act in almost every episode seems to have gone beneath Stuart’s radar or at least his previous dislike of bullying. I suspect his audience might have been reduced if he had actually critiqued this a bit, and you can always dress up layers of irony as (“ahhhhh!”) actually having a go. But I don’t think he was; he was just joining in with Jerry’s subliminal bullying. He certainly seems happy that Jerry endorsed it: the latter apparently took a bow at the Opening Night. Simon Cowell, Angus Deayton, Michael Moore and Sir David Frost (yeah: that lot) are used to proudly puff up its reputation on the show’s webpage, while supposedly subliminal messages like “Chick with a Dick” flash by on the website in sub-Jam style, 10 years too late to look anything but a desperate grasp at the provocation that Jam did so well. David Hasslehoff and Dido are big fans. Jim Davidson might have been proud of all this, but it’s all a bit disappointing from you, Stuart.
So, it didn’t feel fair or interesting writing something about just how subtly damaging the original Jerry Springer show was to transpeople, because it’d be like complaining that the Colosseum games in Roman times were a bit mean on the lions, christians and slaves thrown into the ring. Of course Jerry and his production company wanted people to get hurt and end up throwing chairs at each other, because the majority enjoyed it. Jerry’s previous incarnation, Jerry Bentham would probably have approved: “the greatest good of the greatest number”.
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But, Stuart could have done this differently. He retains transsexuals as circus clowns, perpetuates the idea that they’re all screwed up, just as the cinema of the 50s and 60s did about gay people, and even seems (in my reading) to confused high camp with being brain/body differently gendered – possibly even mistaking it for another sexuality or a version of being gay. I won’t repeat the quote, but you can see it here at comment 4 if you really want to – this was addressed by the mob at the queening supposed transsexual. I’m sorry: “gay man’s”? Most straight or bisexual transgendered women, being women, tend to prefer straight men.
Stuart can claim of course that he’s just reporting it as it happened on the show, the crowd baying for blood and sieg-heiling Jerry – but he’s not, as he has a surreal dig at religious sensibility at the end which I never saw in any JS show. He’s just made another roman circus for fun. Which is fine, but I’m allowed to say it doesn’t help people like me, so here I am saying it.
The nub of the matter is the original show’s insistence that transwomen “used to be men” (and vice versa, although transmen I don’t think were featured heavily, because they’re not as funny). This of course is a common thing you hear everywhere including on supposedly supportive programs on the BBC, but it doesn’t make it any less false. From this vital first premise, on which many a Jerry Springer show spun to its inevitable chair-throwing conclusion, lay the idea that the transperson was being deceitful in not telling her lover that “he was really a man”. Many of the participants (some of whom, with hindsight, appear to have been actors or heavily staged) played along with this, more fool them, although in the last episode I blinked at the girl was heard to mutter a little submissively “well Jerry would say I became a women, but I’ve always been one…” before the lions were let loose. Much the same tricks have been played on UK TV recently, borrowing from American-style formats: the Sky series There’s Something About Miriam (the “something” being, fairly obviously from the start, in her pants) seemed to almost fetishise Miriam’s status as an inter-op transsexual woman being chased by a gang of unwitting men – and portrayed her as “I’m really a man”, which she stupidly played along with, presumably because the money was good. Why then did the program refer to her as “she”? Because the production team were stupid and confused and it would of course have ruined the enjoyment of the hundreds of beered-up Sky viewers clutching their groins and ooing at their 56″ plasma screens. Transsexuals as the new performing bears.
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Because this idea is so pervasive that post-operative transsexuals “used to be men” (or women), and because so many transsexuals bow to the same pressure and use the same phrases in the rush for acceptance, we have to ask “how do we define a man or a woman?”. If your answer is purely on the basis of what’s attached to the front of the body (“Miriam’s” frisson, played to suspiciously fetishistic extremes with bikini shots), then why the same excitement and furor on Jerry Springer when a post-operative “confesses” to her boyfriend? Surely she’s a woman then, and he has nothing to complain about? If neither of these, chromosomes maybe? But 1 in 2000 births are intersex in one way or another, one of the deepest taboos of our time, which means there’s a fighting chance one of the readers of this weblog will be intersex and not know it. What about an AIS woman? They’re XY (male chromosomally) but their bodies didn’t respond to the masculising androgen in the womb, and they usually grow up happy and secure in their identity as women, even though XY, many never finding out. If you think gender’s down to any of these, what’s your gender? Had your chromosomes checked recently?
The answer is that, of course in all likelihood you know what your gender is: it’s what you know you are inside, and always have, and probably not given a thought to. You may be uncomfortable with your gender role at times: how your current society expects you to act. But you’re probably pretty sure if you’re a man or woman, and if your doctor told you tomorrow your chromosomes were unusual, it wouldn’t change your mind. It’s called gender identity and it’s somewhere deep inside you – in the Map of the Human Heart, and likely created by the unique timing of washes of hormones in the womb.
That’s why Miriam, unless she made some horrible mistake electing for surgery always was a girl, and why Jerry’s victims always were the gender they’re supposed to be lying about being just before they get beaten up on his shows.
One day, there’s going to be a program called “Jerry Springer – The Nopera”, for non-operative transpeople like me – the ones who choose to keep the body they were born in, either because they can’t or won’t change it, because they stubbornly expect society to catch up and understand that your gender identity might not fit your body, that gender is more about the heart than handbags or hand-drills, and expect in time at least a few of their friends and family may be able to leap the gap and address them with (and think of them as) their real gender. It may seem like a big leap, but other societies have been recognising (and welcoming) this since history began. If you’re a Christian and are campaigning against Jerry Springer – The Opera, save a little of that energy and also use some of Jesus’s compassionate intelligence in revisiting gender identity instead of following the mob. If you’re not, like me, but are born in a Judeo-Christian culture, have a go at re-examining the tradition in which you’re currently embalmed, that seems to have uniquely blinded us to variations in gender identity. If you’re from another culture, you may live in one of the lucky ones where you can see this clearly! Heck, even supposedly tyrannical Iran is arguably more progressive than the UK and US.
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So Jerry Springer – the Nopera. It will feature non-operative transgendered people, who will confess that they have been lying all along about their gender: that in spite of their bodies, they are and always were a different gender inside compared to what may be expected from the outside. I’ll be on first, apologising to the headmaster of my single-sex school for breaking school rules, that I was really a girl all along, and didn’t think to mention it, but really should have done so and popped next door to the girl’s school. I’ll confess to my first partner when we were 16 that I was really a girl, and that I’m sorry I put her in the position of having a lesbian relationship without knowing it, but reassure her that it doesn’t make her a lesbian (dread thought!). Several other “noperas” (as we will decide to call ourselves) will follow, some with the opposite polarity to me, confessing that they should have explained earlier to their parents why they screamed when told to “put on a nice dress for your gran”, always ended up climbing trees, and really started scaring them by binding their breasts as teenagers. Few chairs will be thrown. Scatter-cushions will be used instead for some gentle biffing. Viewing figures will be abnormally low. Simon Cowell will not appear at the premiere, claiming he has instead to wash his hair that night.

Enough

I sent this mail out to about 40 people on Sunday: old friends, and family. Half of them knew most of it but golly gee: so that’s me and this weblog open and raw to the world then.
I guess it’s as good a way of introducing any new friends to what this is about as any, poorly-constructed as it is. I’d been aching over sending it since December, and decided I needed a weblog in case anyone who received it wanted to understand a bit more. So it all became a bit chicken-and-egg.
I guess time will tell if it was wise. I’ve been swaying from slightly-euphoric relief to screaming anxiety since, my biggest fear being that it’s an imposition of things to some people who don’t want to know it, and most of all, with respect to gender to the half of those who didn’t know, that they’d be forced to call me something they weren’t comfortable with in public, while raising eyebrows at each other in private. This could only make me more isolated, and it’d be my fault. But I’m so unhappy and lonely, this may be a nothing-to-lose thing, that I should have done 5/10/20 years ago.
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I’m also very worried about precedence: how when some read this mail they may reflect what I tell them with respect to others (some will understand this), or with respect to representations of transgendered issues on the web, most of which I dislike intensely. That’s another article I guess.
Message edited wherever I feel like it, because it’s mine, to protect the innocent, including me. I’m not proud of the style, phrasing, or how hard/embarrassing it must have been to receive by some. But some things you just have to do to survive I guess.
I’ve had some lovely kind short replies, a couple that have made my heart leap with happiness, and one or two that have amazed me with their insight. Because their reactions made me brave, I’m going to include the letter here and now. No-one’s been nasty, so my little Thai friend, who offered to kick-box anyone who was, will have to keep her boots clean for now.

Continue reading

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.