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?

12 thoughts on “A princess wishes she were a frog”

  1. I’m with Vicky on this one, Honey. Don’t start censoring yourself. We come here, voluntarily, to read this stuff partly because we care about you and partly because we’re interested in what you have to say. There’s plenty of other places to get “dry and academic” or “light and breezy”, you know.
    I’ve been away from the computer for most of this month (first overseas, and then down the coast), so I apologise for not clogging up your comments pages like I usually do, and for not being on Messenger for the last few weeks. I certainly haven’t lost interest, or anything like that. Not that I ever say or do anything even remotely useful, but I’m still pulling for you in my own little way, m’dear.
    I’m pretty sure that “living every minute as if it were your last” or whatever is just something that people’s mums say to get them away from the Nintendo and out into the fresh air for a few minutes for a change. Or perhaps something that poets might have used to get reluctant girls into bed, when that sort of rubbish actually worked. I’m pretty sure it’s not a great idea to actually live as if you were running down the clock on some sort of perceived death sentence.
    And of course you’re not going to get all misty eyed at a flower or a raindrop when you’re scared about the future, and feeling like shit. I mean, you’ve got to look for little gems of enjoyment where you can find them – we all do. But you’re not a halfwit, you’re just in the middle of something awful that you’ll one day come out the other side of. I’d say you’re best served by giving yourself every chance to get better, and try to ease back on giving yourself such a hard time over every dark thought you have.
    The fact of the matter is, though, that I don’t really know any more about your condition than what you’ve told me. BUT, fortunately for you, you’ve got a better friend who’s actually been through it, and come out the other side, and is telling you that you’ll do the same, even though you’re in a bit of a slump within an even bigger slump right at the moment. That’s a pretty useful perspective right there, and I’d put it front and centre, if I were you. It’s only when hope’s gone that you’re really in trouble.
    And hey, if it’s the “little pleasures” we’re looking to, in order to get you through this, you must be taking at least some pleasure from the written word. This is eloquent, sensitive, powerful stuff you’re writing, Miss Honey, and my hat’s off to you for it.

  2. i worry about this on my own journal: blathering on endlessly, filled with self-pity, and alienating people with talk of an unfathomable illness. nobody can imagine what this is like. i think i’ve told you about the remission i had for about a year…i looked back on the 6 months i’d been severely ill and thought–i had all of that free time, why didn’t i study up on language or do something USEFUL? and now i’m back in an ill body and exhausted mind, and i understand all too well. if i couldn’t understand it then, from a (temporarily) healthy person’s perspective, how can anyone else?
    buuut what i was saying was that i have the same concerns about my own expression of…anything in my life. so i talk a lot about the inane, because it’s been 7 years that i’ve been sick (something i don’t actually admit much publicly, once again for fear of alienation/uncomfortablepity/whatever). and sometiems i don’t want to think about being sick, and i’m sure people get sick of hearing about it.
    but at the same time, i read an entry like this one and i can relate waaay too well. and it’s good to read, to know that i’m not alone in this. and sometimes when i do my own blathering about this illness,it does feel worthwhile, if only for myself.
    i’m kind of a worst case scenario by your standards in some ways, but at the same time i’m not mired in some deep depression, just struggling with ongoing and rather intense frustration and boredom.
    i swear i had something cohesive and astute to say, but it’s just not quite accessible to my addled brain right now, so i keep typing trains of thought i suppose, because i wanted to comment.
    vanilla flavoured david’s comment had some good things to say.

  3. Oh dear, please don’t feel that what you’re writing looks like self-pity. It’s so insightful and thought-provoking.
    How you document what you’re going through says a lot about the human condition in general. This blog has made me think about so many things, including my own identity (e.g. how the outside and inside compare and influence oneanother) and how I live my life.
    Ultimately (selfishly) I just love how you write. Don’t stop, you have a real gift. (Sorry if I got all slushy on you there!)

  4. Of course, if you feel like doing “dry and academic,” don’t censor yourself from that either! I like the heavy stuff and the light stuff, the desperate stuff and the academic stuff. It’s why I visit here. And it’s all about what I want. Is it horribly selfish of me to have read this particular post — about the relapses and the empty horizons and so on — as a comment about your own experience and also about life in general?

  5. There’s another list floating around 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.

    Just for the record, fuck ‘em with a forky stick. Making your prison cell comfortable doesn’t mean you’ll stay in there forever. But if you’re going to be there for a while, you might as well make the bed, plump the pillows and carve yourself a chess set out of prison cutlery…

    My life with this stupid illness finally started to look up when I did just what they say you should not do. It wasn’t easy, it wasn’t without grief and it’s still not without grief, but at least I can breathe occasionally and I have found new types of meaning…and I don’t find joy in raindrops.

    (I venture to suggest it’s not that the people who take this approach are condemning themselves to illness, people who take this approach take it because it’s the only one they have. They are no longer physically able to play the ‘hope’ game.)

    Although I’ve had depression and an anxiety disorder that predate the ME, I have not found the two to be inextricably linked.

    I’d not read Boethius before. I think I get where he’s coming from.

    And it occurs to me that it might explain why my mind has gotten so, um, medieval in recent years…I seem to observe things my healthy friends just can’t see…

    You are good for my brain. I like that you pull me out of my normal style of reading. Thankyou.

  6. Hi,
    I’ve just found your journal via a comment you left on one of splodge’s recent posts and wanted to tell you that you write beautifully and echo sentiments I’ve not been able to express anywhere near adequately for my own liking.
    Would you mind if I added you to my friends list at all?

  7. Mind? I’d be really pleased, please do, Jo. Your deviantart’s really cool (you make jewellery – is that one of yours on there? beautiful colours) and I just read the top page of your journal – wow you’ve been through some trouble recently.
    You write really well: it’s weird that people whose writing I feel brings me back to planet earth after what I see as rambling self-pity are the ones who say nice things about mine. The thing that struck me the most was when you said:

    I want to apologise to the entire world for the state I’m in, I want to demand a bigger apology from whatever it is that causes me to be so sick. I don’t know whether I’m the guilty party or the victim and I don’t want to play either role.

    That is so how I feel too – and it’s spinning me round and round just now. With gender as well as illness. Seeing someone else write it made me feel a bit less guilty.
    I guess I should ask everyone like you and Sali who post here too whether you’d be happy or not for me to copy any comments to my main weblog, like I did Splodge? It’s fine if not – but I’d better ask you both.
    Meanwhile please befriend me! I need friends.

  8. To echo that.. it feels weird that people whose writing touches me feel something similar in return.. especially considering how vague I’ve been feeling lately. Thankyou.
    Especially when I consider my own journal to be rambling self pity also.. heh.
    Yes – that necklace was mine.. I was more testing out the camera than anything else there. :)
    Less guilt is good.. I’m very much glad that I wrote it then. It’s a bloody hard position to be in with the illness. To have it apply to gender also.. I can’t make assumptions, but it’s near heartbreaking. It’s something I feel strongly about.
    And certainly – copy whatever you like. :)
    Friended!

  9. i’m doing it, aren’t i? what i said i never would? fading? i didn’t mean to. since i’ve come back from texas i’ve been a mess. and i know i should lean on you instead of pulling away, but i’ve just been a wreck, and behind on schoolwork. i hope to start coming on instant messenger again soon. i popped in just now, but you must be in bed (good for you).

  10. Honey, I don’t see a bit of self-pity. I think so many people with chronic illness think they should not speak honestly, directly, and fully about the realities of their lives. You are simply being true to yourself. *Some* people probably don’t want to hear about my weekly trip to an out-patient oncology center, let alone the daily BS of being sick; those people should not be my friends and shouldn’t read my journal, and that’s up to them. One of the things I like best about your writing is your practical but heartfelt assessment of some medical and physical realities in your life, Honey. Please don’t lose that or let anyone censor what you know you need to talk about here. You do help people through what you say here.

  11. Aw thank you Jen, and all, for your kind comments. I don’t thank people enough on here, but please realise every comments back is like water in the desert – makes me feel less alone in all this.

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