A princess wishes she were a frog

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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.

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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?

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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?

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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

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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.

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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

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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.

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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!

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