“we have growing confidence that we will have a test, track and trace operation that will be world-beating and, yes, it will be in place by june 1st”

boris johnson, 20th may 2020

i took a covid test from the government the other day. i think it is very unlikely that it will be positive, but am keen to be certain. my ME throws up so many novel and baffling symptoms so often, and additionally i have had convincing indications of a common cold every day for the past few years – these coldy symptoms vary in severity, but are constantly present – and all of this means it is impossible to assess accurately, when unexplainable new symptoms occur, whether i have an extra infection on top of my day-to-day experience of an immune “system” turned inside out. but i developed a bit of a cough last weekend, as well as increased exhaustion, and felt the need for clarity.

i heard dido harding on the radio news claiming that “anyone can get a test today if they want one” on the exact day that i decided it would be sensible to request my own test. she sounded like she knew what she was talking about. ha ha. i went online to find the government website where you order tests. i was relieved to discover that you can have one sent to your home address and aren’t debarred on account of not having a car and not being capable of driving to your nearest football stadium. i entered quite a lot of information about myself. when i got near to the end, the website explained that if i was to qualify for a home test i would have to agree to allow an organisation called transunion to confirm my identity. if i didn’t like the prospect of this check, i could always go right back to the start and ask for a football ground test instead. (i don’t know about you, but if i’d been involved in designing that website, i’d have suggested that this condition ought to be shared before someone enters lots of personal details, not afterwards.) so anyway, i thought, fuck it, this is the only way i can get tested, who knows who this transunion bunch are, but i’ll take my chances and click on yes…

…by this point the thin man had arrived. and i made the ages old mistake of cheerfully announcing to him that i’d almost finished requesting my test, and that it had gone smoothly, including a little boast about knowing my national insurance number by heart…

…when the website took me to its final page and, hey presto! informed me that it hadn’t been able to confirm my identity.

oh dear. i must have typed something incorrectly, shouldn’t have crowed about knowing things off by heart, and most of all shouldn’t have called it as a win just before the finishing line. silly me. i’ll have to do it again. so i do. then the thin man does it again again, after my second attempt fails. the website continues to deny my existence. (i find it hard not to take this as a personal slight; one of my favourite neuroses involves questioning my humanity, and now transunion are expressing their own doubts over my human credentials.)

after attempt number three fails i decide to try the helpline telephone number offered up on the website. a kind and helpful chap answers almost immediately. his confidence is heartening. he sounds like he knows what he’s talking about. ha ha. apparently the fault isn’t with me, but the website, which he describes as glitchy. not to worry; he has special powers and a special code which will reverse the glitchiness. he is so sure he is about to solve my problem that he lets out the beginnings of a whoo-hoo, but stops part way through the hoo…oh dear. on this occasion his special powers aren’t strong enough. he can’t order me a test after all. or he could, if i wasn’t a disabled wheelchair user who doesn’t have a car and therefore can’t get to the football ground…

…can he give me any advice on what to try next?

yes. he recommends that i phone the same number again tomorrow. he is very apologetic.

following one more bash on the website and a second phone call the next day, i finally succeed in clinching my test.

any of you who have experienced carrying out your own home covid test will know that the first thing you are required to do, before you even think about unpacking the kit or doing anything with it, is register your test online.

i bet you can’t guess what happened next?!

…luckily a very kind and helpful chap answered the phone. he assured me the cause of the problem wasn’t me, but the website. and he was able to override the glitchiness and register my test.

so it took me four online endeavours and three phone calls to get to the stage where i could take the test. i lost track of the number of emails i received containing the code which was meant to finalise my request, but they were sufficient that i now know that code by heart.

some people think the government has made a massive balls-up of its response to the global pandemic. some consider the testing “system” farcical. and some say that members of the government and those employed by the government shouldn’t be permitted to tell barefaced lies, especially not about matters of life and death.

[reader, i tested negative.]

politics is psychology

caroline wright

if i had to rate my favourite ever messages conveyed on a badge, i think “according to heisenberg’s uncertainty principle i must be lost” would be closely followed by “i’m not a tourist i live here”, but ultimately toppled by “just passing through”. just passing through is so beautiful both in its elegant simplicity and its accuracy. this life business goes by so fast. as someone who has had a shaky relationship with her own entitlement to be here for many chunks of her being here, i now say: you might as well stick around, ‘cos they’ll be turfing you out before you know it.

some things don’t get any easier. others do. or at least, some things get easier on given days and during particular periods. i am fairly certain that depression takes up less of my time as i get older. where i am right now [i saw a few “you are here” signs last week. i like how confident their declaration sounds. i might not know my arse from my elbow, but somebody somewhere is absolutely convinced that i am here. that is reassuring]. anyway, as i was saying, where i am right now might not be the best position from which to make this assessment. i have been sinking into various states of anxiety and depression for a few weeks, so here and now doesn’t offer a balanced viewpoint (or offers an even less balanced viewpoint than usual).

some of the things that don’t get easier are maddening. why can’t i learn to remember that those phases i go through of not being able to write do pass eventually. when i don’t write anything good or interesting or funny, and additionally can’t locate the helpful kind of thinking power which would at least mean i could work on existing drafts and try to find ways of piecing fragments of notes together – when i go nowhere with my writing for weeks and weeks and weeks – why do i still, every single time, believe that on this occasion it – aka the muse, or flow – really has gone forever? it’s not that i don’t try to challenge this conviction. each time i hit writer’s block, i dutifully remind myself of all the other times i had writer’s block, and how good a job i did of catastrophising during all of those previous episodes: how i was convinced i’d never find my flow again; and how certain i was that i’d join the long list of people who had started blogs but given up on them; and how if i’m not going to be able to write anything i consider worth publishing again, then my life has become entirely pointless and i might as well give up – well, it would be really cool if i could remember it does come back. at any rate, it has done so far. it would be helpful if i could take into account the weight of evidence of what has occured up to this point. what a tricksy, slippery creature my mind is, seeking to taunt me at every opportunity.

the first time i recognised that my basic theory behind worrying is to ward off bad stuff from happening in the future, or to attempt to render the effects of bad stuff happening a bit less bad by having gone over the situation of concern so many times that i have prepared for the badness and might catch it unawares and thereby reshape it into a more innocuous form, i was quite pleased with my discovery. but this awareness could only be useful if it helped me to stop worrying, or at least reduced how much time and energy i put into worrying. which it hasn’t.

another thing: blind optimism, when viewed from a distance, appears foolhardy. but i am friends with a blind optimist, and it really doesn’t seem to do him any harm. his optimism stretches so far and wide that when the good thing he was expecting to befall him doesn’t after all, he simply reassigns his optimism and casts off in another direction. if i became an optimist, what harm could it do me? for example, if i did develop lifelong writer’s block, but continued to be certain i was about to reconnect with my flow until the day i died, how could that be bad? yet i feel my innards clenching in rebellion at the very notion: i loathe the possibility of attempting to fool myself; i am temperamentally averse to an easy life.

a long time ago, when i was young, questioning the essence of humanity’s moral nature felt something like a game. it seemed more risque than calamitous to raise the possibility that people might be more bad than good, and that as a species we are fundamentally bent on destruction. i think that was because, even though i didn’t know it, back then i did believe people were more good than bad. which brings me back to the matter of the weight of evidence. it is a terrible shame how the more human beings there are, the more we humans seem to lose touch with our humanity. i want to propose an idea which i reckon could help: i think that if we collectively recognised that politics is psychology, and agreed to apply emotional intelligence and psychological analysis to our future dealings, we might just afford ourselves a fighting chance.

even after april
by god there is no excuse for may
bring forth your flowers and machinery

e e cummings

faith has never been my strong suit. i craved it as far back as i remember and i crave it still. when i was around seven or eight years old i spent a lot of time alone in our village church and churchyard seeking belief in god. i recall striving to convince myself that i’d located this longed-for certainty somewhere amidst the crumbling gravestones and unmown grasses. deep down i knew i hadn’t. i think i had the idea that if i laboured hard enough for long enough at trying to believe, at some point that effort would translate into belief itself.

it can be hard to navigate a path between the news and our emotions concerning the news. many times i’ve joked with friends about our delusional impression that we can influence the outcome of a particular football match or news story according to how we engage with that story. we recognise that we are tricking ourselves – we don’t truly think we possess deific powers – but that doesn’t stop us getting so involved in the unfolding of a storyline that we clench our muscles and grind our teeth. watching drama shows and films frequently entails egging the action on – we want a set of circumstances to get increasingly chaotic and destructive. right now, when the news looks more like a film than it has ever done, i am finding similarities between my involuntary responses to fiction and fact particularly confusing. it proves impossible to keep reminding myself not to mix up how i watch true life stuff with how i watch pretend stuff, and it frightens me that following the news can trigger unseemly reactions, such as increased excitement at the prospect of things getting worse. sometimes i feel complicit. i’m tapping into monstrous aspects of collective humanity, while simultaneously recoiling in personal horror.

each time i sit down to attempt to write something new, i am reaching as far as i can inside myself to try to pinpoint a sense of experience which i hope to express convincingly. from its beginnings within me i wish for that expression to subsequently travel as far as it can outwards in order to speak to as many others as possible. this is my hope. this is why i write.

what i yearn most intensely to convey to the outside world is the stark isolation of my experience of long-term illness. on an intellectual level i know that being ill is not a moral issue, yet i feel inadequate and ashamed on account of all i cannot do and cannot be. i have felt this way to varying degrees of severity every day for almost thirty years. before lockdown i couldn’t imagine accessing a space which would provide an antidote to this. i believed i would have to cover a great physical distance, or possibly travel through time, in order to locate a place sufficiently non-judgemental, and with enough kindness and humour, to feel like home to me. i daydreamed of somewhere where being sick wouldn’t mark me out as it does here. i hungered for an environment in which manic pursuit of achievement is not the default mode, where being is more important than doing, and where taking care of one another is the primary focus. in this fantasy utopian habitat, intellectual, physical, and emotional resources would be pooled and distributed evenly, so that each citizen would get their needs met and would never be made to feel that those needs were inappropriate or excessively burdensome to others.

imagine living in a place where there is no such thing as a waste of time.

in the late afternoons during lockdown the thin man takes me in my wheelchair to the benches near the bowling green beyond the castle. we sit and look out at the view across fields, railway line, river and downs. this view has always reminded me of a picture in a book i had as a child. and whenever i think of this picture a familiar unease creeps over my skin, burrows deep into my insides and causes a tightening sensation low in my guts. the illustration transports me back to my most disturbed states of emotional alienation and dissociation. it is so sanitised and barren, entirely cleansed of any irregularity or imperfection, as if the person who drew it set out intentionally to suck the beating heart from the environment they depicted. if you were able to zoom in to a detail of the riverbank there you would find no insects scuttling out of sight, no spider web strung from one long frond to another, no bird shit, rabbit droppings, or decaying leaves – no mess of any kind. there is nothing earthy there, and nothing actually of the earth.

i have been getting to know the two trees which are closest to the bench we sit on. i look up at them on each visit and witness their daily changes. a couple of weeks ago the trees appeared to be made only from wood: main trunk leading to thick, heavy branches which lead to slimmer branches and in turn develop into twigs. then one day i noticed the first change, when i saw that at the very end of each twig a tiny bud was taking form. and the next time we dropped by, those tiny buds had begun to unfurl into fragile tender pale leaves. this week the leaves are fully formed, and i am able to pull a little twiglet away from the scar of a pollarded branch near to the ground to bring home for identification purposes. fat slow sleepy bees pass by whenever we are there, materialising so predictably that i think of them as one specific bee who i’m getting to know. and midges swarm and swarm, at some points seeming to fill every square inch of available air, and at others receding into the middle distance. i don’t recall seeing this many swarming midges since i was primary school aged.

in any comparison of then to now there is the perennial issue of memory being unreliable. apparently william james’ theory is correct; each time we re-remember a recollection we aren’t recalling the original event, but the last time we visited that event in our memory. so chances are that our favourite memories – those we go to most often in our minds – are the least trustworthy, since they have been rehearsed and subtly altered more frequently than others. i learnt about this phenomenon in a film called “marjorie prime” and more recently it came up in a television programme titled “quiz”. my attempts to seek out more detailed analysis have been unsuccessful, which is frustrating. all the same, as soon as i encountered the theory it felt like it made sense. and sometimes that is the best we have – our gut sense.

it seems many of us are relishing the opportunity to pay closer attention, making the most of our views and viewpoints not being interrupted by too many other people. while i’ve been seeing and hearing more birdlife, i have also been wondering if birds pay us any attention. i suspect that like me they are experiencing their own particular sort of holiday right now. they are enjoying a break from air pollution, from the endless battering din of traffic, and from car and shop alarms shrieking out and interfering with the detail of each other’s songs. i envision them chattering together about how cool it is that those weird crazy beings who acted like the world was their oyster have finally gone elsewhere and left them in peace. then suddenly on a thursday evening those humans come crashing back in for a few minutes, letting off fireworks, bashing saucepans, applauding and whooping. i reckon the birds curse these blundering creatures’ brief return, which lasts just long enough to remind them that the idiots continue to exist and are still prone to acting like they own the place.

i have heard a number of people remark that they have surprised themselves in their reaction to lockdown. i definitely couldn’t have predicted that in these strange times i would discover a kind of rest cure, a temporary holiday from my usual state of loneliness and shame. for a short while most people in the uk are living lives similar to the one i’ve been forced to live for almost three decades. today i am not the odd one out, and this brings me an unexpected sense of peacefulness. as a new and frightening cause of death stalks the planet, there is nothing straightforward about admitting that I like the way this situation is affecting me. i like it here.

who looks outside, dreams; who looks inside, awakens.

carl jung

i would not wish my dreamland on anyone. it is a bleak, frightening, alienating space. but once in a blue moon my unconscious treats me to a dream which is not horribly disturbing or traumatising.

the other night i was dreaming about my new baby – a boy – who i was carrying around with me wherever i went. (in this dream i was not disabled.) for most of the dream my baby bore very little resemblance to an actual human infant. his appearance changed at different points, but mostly he looked like, and was about the size of, one of those weird gonk toys we used to have in the 1970s. (in fact, i currently have one on my mantlepiece. i was delighted when the thin man found it for sale in a local shop a few months ago. i think it cost 50 pence.) in case you are unfamiliar with gonks, they are plastic troll-looking dolls not much more than an inch high. they have a disturbing hollow in the top of their head, as if they’ve been scalped and had their brain scraped out. a mad tuft of brightly coloured synthetic hair roughly two inches long erupts from this head-space, adding to the tiny creature’s amusing air. i am very fond of mine, and enjoy how its striking green hairdo mirrors the shape of a small one-leaved succulent plant nearby on the same mantlepiece.

at one stage in the dream my friend the professor turned up. she was taking in my new offspring appreciatively, convincingly oblivious to his glaring similarity to a small plastic toy.  as the two of us gazed adoringly at my little boy, the professor exclaimed – “he looks exactly like your father!” and when she said it, i was convinced she was right. in that moment i believed that my plastic novelty toy baby looked just like his grandfather, my dad.

my major concern during this dream was what i would call my new child. (i can’t say for certain whether this struck me while i was inside the dream, but in hindsight i realise that when i think of my unborn children they are almost always two girls. so i have names for possible dream daughters, but not for sons.) i was very unconfident about choosing a name. i kept asking other peoples’ advice, until suddenly i knew that i wanted to call him erland. and when this name came to me, my dream son transfomed into a real full-sized human baby. i experienced the pleasure of the weight and warmth of his chubby form in my arms, and tenderly cradled his head in one hand. erland didn’t sound right (ha ha) with my second name, so i decided he would be erland cooper wright.

erland cooper is a real person. he is a scottish musician who makes music about landscape and wildlife in orkney.

the purpose of literature is to turn blood into ink

t s eliot

the thin man and i have one of those amusingly familiar partnery conversations. it is clear to me that he is distressed in some way, so i ask him where in his body the troubling emotion resides. he thinks for a while then decides the feeling in question is taking place inside his head, and taps himself on the head to indicate this. only very rarely does he locate any emotion elsewhere in his physical being.

when i refer to parts or organs of my body to describe emotions, i don’t mean it metaphorically: my gut feelings are actual feelings; when my heart sinks, i feel it drop – not literally, of course – but the sensation is immediate and appreciable; and i recall the exact time when the phrase “seeing red” suddenly made perfect sense – it manifested as a real experience of momentarily blinding red mist during a childhood row. some of my organs are so inextricably linked to particular emotions that i cannot imagine how i would go on experiencing that emotion if the organ it connects with was removed.

nobody has had to establish whether they go on feeling their heart swell with love following removal of that organ. but more than once i have sat in a consultant’s office and had an ostensibly pragmatic conversation about the possible removal of my womb, ovaries and other pelvic organs. in that setting – during a medical discussion with an almost stranger – i have found it impossible to attempt to explain that for me the prospect of losing my uterus is equally as earth-shattering as the notion of my heart being cut out. where would all those various connected but subtly different feelings go, or be, if i lost the place where they have always lived?

my ongoing attachment to this part of my body makes no rational sense. i don’t understand how i’ve gone on celebrating menstruation despite the fact that each month the blood which poured out of me also flowed the wrong way on the inside, ravaging my pelvis and gradually turning my innards into a war zone of adhesions, orange- and grapefruit-sized cysts, mangled tubes and glued-together organs. i spent my periods doubled over, in tooth-grinding, crazy-making, bone-splitting, eye-bleeding agony. repeatedly envisioning cutting out my insides. praying for unconsciousness – wishing to be able to pass out even just for a moment, simply for a breath of respite. i was in bloody hell. and after one of my several surgeries – by far the most brutal – i spent an unremembered day screaming hour after hour, apparently unable to communicate to the intensive care staff that i needed help (i know about this day only because the friend who visited me that evening reported to me that the man in the bed next to mine had told him that the staff had been hurting me all day, as evidenced by my screams).

like i say, it makes no logical sense that i carried on feeling so positively connected to my womb, or that i continued relishing the magic of menstruation. but what magic. every month this disconcertingly visceral thing happens to your body, whether you like it or not. its occurence has absolutely nothing to do with you; it is entirely involuntary.  i remember the first time i found out about periods. my mother took me to london to a show and while we were walking around she explained the basics of menstruation. i couldn’t believe my ears – the whole thing sounded so implausible. afterwards i felt as if i’d been given shocking news about some misfortune afflicting a loved one, including the commensurate sense of unreality. (which i guess i had, in a way, though i’ve never related to the notion of loving oneself. as an aspiration it seems wildly ambitious. i think a kind of distant respect is plenty to hope for.)

i have spoken before about the challenges which being ill for many years bring in connection to my relationship with my body. when i reflect on a few surprising examples of my physical system continuing to function as it is meant to, despite and alongside all the sickness symptoms, i experience a confusing kind of pride. it does seem incredible that my reproductive hormones have silently kept on doing their thing, so that at 53 i am still not officially in the menopause. perhaps this sheds a little light on these mysteriously complex emotions regarding my pelvis and its contents: that as well as being the cause of such savage destruction and suffering, the hormones themselves symbolise survival among the ruins.

talking of having body parts removed, at the end of 2019 i acquired a new diagnosis to add to my long list of diseases and ailments. gallstones. which is good, in the sense that i knew something different was wrong, that i had a different and more recent sort of pain, and that gallstones are relatively easy to treat. it is a pleasant change to get a condition which is curable. plus gallstones sound like a down-to-earth, old-fashioned kind of problem. and after i found out about mine, i realised i’ve been using the word galling a lot lately. this definitely was meant metaphorically; i was barely aware that i had a gallbladder, and certainly couldn’t have hazarded a guess as to its whereabouts.

hot off the press!

things fall apart; the centre cannot hold

w b yeats

currently many parts of the uk are experiencing destructive floods. some residents have had to move out of their homes, and the most unfortunate will never get to return to theirs. i have been thinking of disabled and chronically ill people in such situations, and wondering how on earth they cope. i know i loathe the prospect of having to move out of my flat on account of a practical disaster. whenever places elsewhere flood i am reminded of the lewes deluge of 2000. and whenever i think about places anywhere flooding i respond with a mixture of gratitude and dread: from a selfish point of view i breathe a sigh of relief that my home is near the top of our town and is therefore unlikely to be inundated with river or sea water for many generations to come; on the other hand, i have endured a very different sort of washing-machine-based watery attack from an ex-neighbour which means that i will never have the luxury of resting on my laurels regarding floods.

other times i worry about fire. i consider how common it is for fires to be started by accident, and how quickly these ancient timber framed buildings would go up in flames.

now i have a whole new architectural concern to grapple with.

in recent weeks parts of two structures close to my flat have collapsed. early in october a bit of side wall of the white hart hotel fell onto the pavement below. and earlier this week a section of the castle wall only metres from my flat disintegrated. i heard it happen. i was lying in bed half listening to the radio and half listening to my noisy neighbour (he is called stompy – talk about nominative determinism!) when another racket completely overwhelmed the sounds of both neighbour and radio. this pandemonium was so unfamilar that i only succeeded in describing it after the event. in hindsight i’ve identified it as a kind of crunchily crashing explosion.

***

after i wrote the section empathising with sick and disabled people who are forced out of their homes by floods, i waited for the model citizen. he is like an adorable little clockwork robot. he obeys several long-held self-imposed rules and restrictions, and arrives at the same time each monday afternoon unless there is a compelling reason to alter his plans. to my consternation he was a few minutes late. then he phoned from his workplace along the street to ask if i was home. i said i was. he expressed some surprise; it transpired he was calling because when he’d got to the end of the alley leading to my front door a policewoman had stopped him. she had told him no one was allowed along pope’s passage or castle ditch lane; plus there would be nobody home anyway, as all the flats in pope’s passage had been evacuated hours before.

at the exact time that i was writing about recent local architectural catastrophes, and, linked to those, my personal fears of being forced to leave my flat, i had been oblivious to the fact that i was meant to be one of those evacuated from their own home on account of a very local structural collapse!

schadenfreude is so nutritious

will self

i am searching for a close friend for news from a wrong planet. another blog which speaks to me. a blog twin.

a few years ago people who knew i was writing regularly used to ask me why i didn’t make a blog. my explanation was straightforward: i had no idea what a blog was; i had never looked at someone else’s blog, so why on earth would i ask anyone to read my own hypothetical blog? i am hugely grateful to a handful of friends who convinced me to overthrow those misgivings and have a bash at this blogging lark – specifically the thin man, the genius, and the producer; without their encouragement and practical help i would not be creating this project which has surprised me in so many ways, and has proved to be far more worthwhile and sustaining than i ever anticipated.

producing my blog galvanised me to attempt to familiarise myself with the blogging world in general. so i’ve been reading lots of blogs, and in particular lots by other ME and chronic illness people, since i began publishing mine. thus far the result of this research is that i feel like a stranger in the blogiverse (sorry). i have found blogs which are very well written and informative, but are also completely literal and bypass emotions and the inner life altogether. and i’ve found others which are extremely emotional, but not at all well written, and which strike me mostly as unacknowledged private therapy sessions – the kind of splurge stuff i wouldn’t want to inflict on anybody else. what julia cameron calls “morning pages”, and i call papers to be scrumpled up and chucked onto the fire.

these latter sorts of blogs bring to mind the writerly advice which favours “showing not telling”. although i am not particularly keen on this kind of guidance about writing, it seems inevitable that readers will feel patronised by – and be bored with –  endless exposition. also, it perturbs me that so many of these types of blogs state an unspecified desire to “help others in similar situations”. i’m all for helping, and being helped; but it seems to me that there is a current epidemic of lay people setting out to save souls*. i have written about the power of resonance – that particularly validating type of recognition in which we see part of ourself or our experience mirrored back at us from something another has created. resonance can be a wonderful, profoundly consoling response. but it doesn’t work by prescription or self-conscious intent.

i was discussing my quest for blogs which i relate to with the model citizen recently. he pointed out that when he wrote his book about plastic toy figures it was on account of yearning to read such a book. and i remember hearing a member of the band the xx (not a band whose music i’ve ever enjoyed, but that is beside the point here) saying they started out making the kind of music which they wanted to listen to. perhaps i am writing the blog i want to read. perhaps. but if i am, that hasn’t stopped me wanting to find others which speak to me.

in my recent wanderings about the internet in search of connection, i encountered a motivational post titled “15 fatal blogging mistakes you are probably doing”. wow. this is exactly the kind of writing which draws me in for all the wrong reasons. this delicious piece proffers the advice that you need to include certain pages in your blog (pages which are not included in my own) because they “rank your site higher on google’s eyes”. wow again. oh, and i ought to mention that fatal mistake number 5 is “not proofreading”!?

but this is cheap fun. i recognise that i am trying to assuage all my doubts and fears regarding my own writing inadequacies by spending a few minutes wallowing in writing which is measurably a lot worse than mine. and i think i know why this sort of material holds such fascination for me – i think it is because through all those times when i’m shrivelling up inside because i can’t find the words to say what i want to, and all the extended periods i endure convinced i will never publish anything again – through all those dark episodes i’m desperate to understand how come there are so many other bloggers who not only never question their abilities, but also keep announcing how talented they are, and who hold themselves up as models of inspiration.

but like i said, this is cheap fun. and it is lazy comfort. after all, two wrongs don’t make a write.

*annoyingly, quite a number of readers respond to posts making such claims with comments saying how helpful they are. but that’s not my problem.

thus we never see the true state of our condition till it is illustrated to us by its contraries, nor know how to value what we enjoy, but by the want of it.

robinson crusoe, daniel defoe

this watery drowning place is one of those chronic illness states which seems like it must have been intentionally designed to undermine and gradually crush the human spirit. that is true of all the symptoms which drive us sick disabled people further than ever from the rest of the world and the rest of you human creatures. i have a number of urgent communications i need to get over to the not-ill population across the water on the other island. these messages in bottles are crucial – we who are ill need you who are well to understand a number of fundamental features of our experience. if we cannot get these points across, we risk our islands drifting too far apart.

the most important thing we need you to know is that, contrary to popular opinion, we did not come here on purpose. we did not come here on purpose. whatever the reason we are over here and you are over there has nothing to do with personality traits; chronically ill people don’t have more or less strength of character or force of will.

perhaps the most straightforward way to explain it is this. imagine you are you. you, with all your character traits and strengths and weaknesses and fears and hopes. you who live in the house you live in with the people you live with and do the job you do. and one day you get a bad virus, it might even be flu. (i meant to say, one day you get a bad virus again. like everyone, you’ve had them before). so you take a few days off work and drink lots of fluids and don’t bother your gp because the best thing to do for a bad cold or even flu is to keep warm, drink lots of fluids, and not pass it around. sit it out.

the sitting it out takes longer than you expected or are accustomed to. it turns out you do need to bother your gp for a sick note after all. and two weeks on you still feel terrible. weak, and so tired that you have to support your head with your hands when you sit up at the table. the truth you keep to yourself is that you are exhausted deep in your bones and muscles in a way you’ve never before experienced. but two of your colleagues who had the same nasty virus are already back at work, your initial symptoms are gone, and if you don’t go back to work it will look bad. and you feel guilty, guilty and ashamed. which is why you haven’t said out loud to anyone else that you are iller than you were a fortnight ago. we push through. that’s what we do, isn’t it? everyone says so. they say take some multivitamins, maybe some echinacea, drink plenty of fluids, and keep on going. don’t give in, never give in. they say giving in is weak and pathetic.

so you return to work. but then you notice that in addition to that strange aching exhaustion deep inside your muscles and bones, your brain also doesn’t seem to be working properly. you are conscientious and have never messed up at work before. but, horror, you realise that the project your boss trusted you with – and let’s face it, it was a fun project, organising a group outing for some of your favourite clients – you totally forgot about it. you will have to arrange a pared down version of the outing extra fast and hope no one notices you only just remembered about it at the last minute.

then you cycle home as usual. but it’s weird, your bike is kind of swerving about, and your awareness feels much higher up and further away from the road than you’re used to, as if you are floating, or dreaming, but not in a pleasant way. it crosses your mind that you might not be safe to be cycling in this state. but whatever this state is seems so unfamiliar and confusing that you can’t be sure. somehow you make it back in one piece and once home sit at the table, holding your head in your hands. you had thought you were going to make a cup of tea, but that seemed to skip your mind. and an hour later you are still sat at the table. but now your head is flat on the table – you don’t recall when that happened – and you are trying to remember something, anything, about your day at work. you know you got there and back, despite the fact that both journeys have kind of slipped through your fingers, or your mind, or something. you have a hazy sense of a recollection of that odd part of the ride when you were looking down on yourself from far above, although now you think about it you have no idea which part of town you were in when that happened.

some time later one of the people you live with comes into the kitchen and you remark that you’ve never felt so profoundly horribly exhausted in your life and they laugh and say they know what you mean.

and you go back to work again the next morning, never imagining this will be the last day you ever do that. the last day you will ever do anything so beautifully, wonderfully ordinary. you are you, with the life you’ve always lived, and the job you love. the job which fills your heart on a regular basis. but some way through that morning which will turn out to be your last ever at work you find you

can’t

put

one

foot

in

front

of

the

other

this won’t do. this will not do. it cannot be. you are at work and have a job to do. this is unthinkable. impossible. all the same,

you

can’t

put

one

foot

and now, one year, two years, ten, twenty-seven years later, you don’t recall how that day you somehow managed to tell your boss that you needed to go home again, hadn’t quite shaken the flu off yet, couldn’t exactly

put

one

foot

and you don’t know whether that fun outing ever happened.

and you know when they said, life is like being a pubic hair on a toilet seat – sooner or later you get pissed off?

and you laughed.

and when they said shit happens, you thought yeah but it happens to people who are a little bit shit or crap or rubbish…

but you sort of laughed.

and now you might just be starting to realise – oh wow, that didn’t happen to my sister or my friend because she is useless. it happened to her by random bad luck. which means, oh no, it could happen to any of us. and if it could happen to my brother or sister, it could happen to me – or, dread of dread, my child.

do you see what i mean?

i see you. i see you trying to pretend you can’t see us, the burning ones. the ones in flames.

so next time you don’t look at me, or someone in a similar boat to me, remember that i could be you. and once you recognise the reality that anyone can get sick, that shit can happen to anyone anywhen, it makes a lot more sense that you feel hostile towards me; you turn away rather than look me in the eye because in a parallel universe you are me, and i am you, and you are the one in the wheelchair. whoops.

do you see what i mean?

i got a message i can’t read

radiohead

if we are correct about linear time being illusory, that ought to be deeply cheering. it means all the existential stuff which weighs so heavy is actually far less important than it seems. but as neil young pointed out, knowing our problems are meaningless doesn’t make them go away. which is a bummer. it would be handy if evolution had come to our aid in this regard, and given us skills at moving around inside time.

wind back to somewhere in the south-east of england in early november 1992. there there is a caras who was disappeared. around bonfire night of that year my life transitioned into a permanent state of emergency. when i say that my circumstances are often impossible, that isn’t hyperbole. i don’t mean sort of, or a bit, impossible. i mean that regularly, for hours and hours, and frequently days, i seriously have no idea how to cope with this situation. i don’t want to tolerate this situation. i am screaming into the void “get me the fuck out of this situation”.

it took me years to learn how to be with being ill. the only way i’ve found to bear it has been to mine layers of acceptance i never imagined i had in me. and that has taken much time and untold effort. letting go sounds a lot more passive and less effortful than it is – the kind of work involved in letting go is the hardest i’ve ever had to do. but being advised to accept circumstances which are impossible is absolutely maddening! of all the useless advice i’ve been offered, i reckon the cheek of anyone – and especially anyone who is miles away from being in the same boat as me, which is almost everyone else  – telling me i ought to accept the unbearable, is intolerable.

on 11th may i held a millions missing awareness event not far from the wrong planet. the occasion was deemed a success by all involved. it was uplifting to be part of such a life affirming action; to come together in solidarity and to turn something so destructive and negative into a positive. two politicians joined us: caroline lucas, green mp for brighton pavillion, and janet baah, mayor of lewes. unfortunately the toll taken by the work i put into preparing for and being there on the day has meant that i haven’t yet returned to my only-as-ill-as-usual levels. i have been missing in inaction. and i’ve spent more time than i had for a while in that horribly familiar watery drowning state.

that drowning place where i’m only part alive and nightmares merge with real life so that i can’t work out which way up i am. when i’m in that inside-out upside-down space i feel like i will never again be able to put words in an order to create a sentence or paragraph which makes sense. and if i haven’t got this – if i stop being able to weave letters into words into phrases and posts – then how would anyone know i am still here, how would i know i am? in which case how would my small broken existence count for anything?

and i think i’ve worked out part of the reason why my perception of the preposterous speeding up of time seems even more dramatic than that of my friends. i think this is because all those times where i’m drowning in nightmares and fever and am far too cold pouring with sweat melting into inexistence merging with the wallpaper skedaddling off the side of the edge of the world – all those times amount to the same time. those hours and nights and days are impossible to distinguish from one another. every time i revisit that not-place i am reliving the same unspecified days and nights and hours again and again.

those episodes steal massive chunks away from my being truly alive life in which i am part of something and share love and jokes and transcend my circumstances.

i have always experienced time as akin to a concertina – something which can be squeezed into a smaller-than-you’d-imagine-possible space, yet simultaneously stretched out beyond its logical capacity. thus an event which occured a year ago can seem like it happened last week, but at the same time an occurence from last week can feel as if it happened aeons ago.

it is strange to be sometimes on the outside peering in at my own life. but some days i have to do that in order to survive. i have to be able to remember how little i matter; to be looking from afar at that insignificant speck of dust floating in space.

Yayoi Kusama

if i could do it all over again i’d be in the same skin i’m in

sly and the family stone

in a previous post i spoke about one of the perils of getting older being the daft indignation of never looking how we think we should in the mirror. i am currently experiencing a particularly bizarre anachronism; at the age of 53 i have developed acne for the first time. having been in somewhat of a spotty phase (spots but not acne) for most of my life, it has only been in fairly recent years that i’ve enjoyed the luxury of no longer worrying about my skin. so i am outraged as well as disconcerted by this latest development. i am accustomed to my ME regularly coming up with new manifestations. as well as getting gradually generally iller over an extended time, i also often experience surprising extra symptoms. but this acme of spots is a bolt from the blue, and has led me to thinking about skin in other ways: thoughts about the edges where places overlap and meet; about our outsides and insides; about our connection to the rest of the world; and about skin as an emotional barrier.

in my “staying home” post i referred to how i’d gotten lost in a moral maze in the first part of my life. back then i was constantly missing several layers of skin, and was dangerously prone to seeking out and paying heed to advice on almost any topic, from more or less anyone. because that tendency caused me no end of trouble, i’ve subsequently given a fair amount of consideration to psychological advice-searching: to how much faith i used to put in it, and how much some other folk still do. and i’ve come to the conclusion that that faith is usually misplaced.

asking for practical guidance is ok – questions such as where is a good place to get curly hair cut, and what shall i do about my sofa leg gradually losing contact with the rest of my sofa – both of these queries have resulted in helpful feedback in recent times. but when i was lost (and even nowadays when i forget my way for a while, i come down with the same symptom of my feet failing to stay on the ground) – so, when i am lost – the sort of counsel i’m seeking is emotional and philosophical. and i’ve found these kinds of requests for advice don’t often yield useful results.

lately i’ve been pondering a few of the ways in which our culture’s messages are directly oppositional to getting by, let alone flourishing, as a sick and disabled member of that culture. and even though we haven’t asked a question, the kinds of messages we are sent every time we watch television, read a newspaper, or are pushed along a street in our wheelchair, can feel an awful lot like unsolicited advice. especially at times when our skin isn’t offering robust enough protection.

i guess it can be possible to be sent, but choose not to receive messages; but when the messages come so fast from all directions, and often in disguise, it is a huge challenge to be sufficiently alert to recognise and fend them off before they’ve found their way beneath our skin.