i have had a piece published by sussex university. check it out... Life Writing Projects
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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
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
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,
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
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
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.
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.
i respect those who believe in a life after this one. but i don’t understand them. it seems to me that religion is no more than an excuse for not accepting the conditions of life. the here and now, nothing more than that. that is also the unique aspect of our life, the wonderful part of being alive.
i quote others only in order the better to express myself
it was an afternoon around the end of the summer last year. a couple of weeks previously, i’d finally bought a copy of the book a dear friend of mine, the wise owl, had published in 2012. my ME makes reading for any length of time impossible, but i’d dipped into the book and relished small portions of it. we hadn’t seen one another for a few years, and her book brought my friend back to life in my nowadays on the wrong planet. it felt like we were getting reacquainted. thus at that time the wise owl had been on my mind and in my awareness more than she’d been for ages. that afternoon i spent some time looking her up online. i discovered how active and well known she is on social media sites. then i put on some lipstick and went across the road to the local café, as i do on many afternoons.
it was a rather dreary bank holiday monday, and there were too many people i didn’t know sitting outside the café – which i think of as my café – for my liking. so i was in a distracted state when suddenly – hey presto! the wise owl appeared. for about seven years we’d not seen each other, had very little contact, yet just minutes after i’d been researching her online, and only days since i’d started to familiarise myself with her book, there she was. standing right in front of me. i’d magicked her up.
i could tell it felt odd to her that i didn’t register any surprise. my friend was pointing her face out to me for dramatic effect, gesturing – surprise! here i am! surprise! – but from my matter of fact response you’d imagine i’d seen her last week, or had been forewarned of her arrival. the reason for my surprising absence of surprise was that seeing her in the flesh seemed such a natural extension of all the other contact i’d had with her recently. it made sense. i hadn’t realised it, but i’d been expecting her.
people who don’t share the sense of serendipity or precognition which i and many others experience could find plenty of ways to shoot down what i’m trying to describe here. but…
and i am ever so wary about broaching this subject matter for a number of compelling reasons. but…
for one thing i am frightened, properly frightened, of being lumped in with new age thinking in any way, so frightened that i’ve not even attempted to post anything on these subjects before, despite how close they are to my heart. but…
if your life has been destroyed by a terrible physical disease which about half the world chooses to believe is a state of mind – a mistaken belief – you’re likely to get pretty pissed off with new age bollocks as the years go by, and the seventy-seventh person asks how come you haven’t been healed yet, or why are you so resistant to meeting the right healer in a place like brighton which is bursting at the seams with healers, or haven’t you heard of the lightning process, or…… but…
shouldn’t it be ok to talk about something which overlaps a little bit with magic if you are looking at it from one particular angle, and a little bit with spirituality if you peek at it briefly with your hands mostly covering your eyes from another, without being misunderstood and accused of, horror of horrors, being a little bit new age? but…
but this kind of experience, this stuff in the realm of prescience, is wobbly around the edges, uncertain, and hard if not impossible to pin down. and that makes it nervous subject matter.
since i first began this blog, i’ve been wanting to try to write something about belief. there are always a number of subjects percolating in my system, or in view somewhere on my conceptual horizon. i’m now recognising that belief is such a vast and weighty matter that it is overly ambitious to attempt to put everything i want to say about it in one post. so i’ve decided to simply start out, with no specific goal or endpoint in mind.
up till now i’ve based my beliefs about life, insofar as i have any, on my direct experience. one of the very few concrete conclusions this has resulted in is that i’m convinced that feeling my way through life works far better than trying to think my way through it. i find i’m much more likely to have faith in my decisions when i take this approach.
this is why i’ve decided to cast aside my natural tendency to cynicism and put my trust in something mysterious and possibly significant which has been happening to me for a long time. for most of my life, in fact. i’ve gone through phases where i pay it lots of heed, and others when i’ve pretty much ignored it. (it is frustrating how stupid our minds can be; how many times they can need to experience something before they pay proper attention to, and learn from, that experience. so although i like to think i know that life goes better for me when i am tuned in to my gut sense, or intuition, the fact is that when fresh trouble strikes, i tend to forget this vital resource.)
for a while now i’ve been trying to come up with a satisfactory term for this strange thing that happens to me. i’ve danced around different ways to describe this stuff to do with precognition for so long that i’m dizzy. i’ve gotten so bogged down in self-consciousness, so preoccupied with endeavouring not to put a word wrong, that until now i’ve ended up silencing myself.
for example; if i call it psychic experience i risk sounding like i imagine i could tour village halls helping people reconnect with dead loved ones. and when i bring magic into the conversation, i risk sounding fanciful. all i can think is that i must be inadvertently tuning in to a genuine thing – a real level of communication we humans truly have in our repertoire, but greatly underuse. one thing i am certain of is that being in touch with one’s gut sense nurtures foreknowledge. it is at those times when i’m best tuned in to my inner flow that i’m most likely to connect with prescience.
i feel like i’m seeking out a fragile middle ground where reason and mystery intersect.
though my problems are meaningless, that don’t make them go away
i take quite a lot of things too seriously. when i am at a particularly low ebb, i take some things which really aren’t worth bothering about far too seriously. i think many of us familiar with deep unhappiness and/or depression have a tendency to take things that aren’t personal personally, and have leanings towards comparing our own circumstances with those of others, unfailingly to our own detriment. unfortunately, recognising these unhelpful tendencies doesn’t make them go away.
one of the pointless things i get properly wound up about is how radio presenters talk to me. of course i realise they aren’t actually addressing themselves to me, but i spend so much time listening to radio that it sometimes feels like they are. and anyway, that is plainly part of the point of radio, to make it seem direct and personal. which makes me wonder who presenters do have in their mind’s ear, when they are chatting into their microphone. do they envisage someone they know well, or a neutral version of a friendly face?
the broadcasting tendency i object to most strongly, and which i regard as yet another sign of everything in our culture going down the pan, is relentless, meaningless cheer. i do not want to be advised on a daily basis to have a fantastic rest of the day. in fact, the more i think about this preposterous optimism, the more i consider that almost nobody could take it with a straight face; even the most healthy, cosseted, blessed members of the human race surely can’t achieve a fantastic rest of their day every day? surely what marks out a fantastic rest of your day is how different it is to all your other mornings, afternoons, or evenings? and if such salutations aren’t intended to be taken seriously, then i’d rather they didn’t say them. i was ridiculously grateful recently when a presenter suggested i have a passable thursday. this was a piece of unasked for advice i could really get on board with.
when john peel died i cried for hours. i lost a friend – loads of us did. one of the many things that marked him out as a different breed of broadcaster was that he read out song requests from people in prison. what a great idea. it must be the case that many of those who listen to radio lots of the time are not healthy, cosseted or blessed. the healthy and blessed people are out there having fulfilling careers, raising children, travelling to exciting locations and eating in expensive restaurants. they aren’t lying in bed at four in the afternoon so unwell that all they can do is listen to the radio. or stuck in a prison cell. or too poor to afford a television licence, and therefore wholly dependent on their radio.
i also mind very much the conspiracy of silence which dictates that presenters never, or almost never, mention the fact that not everyone listening is tickety-boo, that not all of their audiences’ lives are going swimmingly. i think what i find most uncomfortable about this don’t-mention-the-germans type approach is its tacit suggestion that topics like bad luck, poverty, ill health or disability aren’t brought up because they amount to bad taste. and when illness and disability are mentioned, it is almost always in a heroic context – to do with triumphing over adversity, or loss courageously borne. people who get sick and stay sick for decades – our stories don’t get told.
when it comes to my favourite radio station, radio 6, not addressing the reality of suffering is such deeply entrenched behaviour that it appears to be company policy. the most glaring example of this is how people who die – and, annoyingly, songwriters and musicians seem just as prone to dying as the rest of humanity – never “die”. they pass away. actually, not even that; they sadly pass away. i find this a very odd turn of phrase – i’m not sure of the grammar, being a lousy grammarian – but to me it sounds like the sadness is being attributed primarily to the dead person, rather than anyone still alive. the ultimate passing of the buck!
i get the point of not wallowing in misery (though my troll might say otherwise). i get the point of tackling complicated subjects with care and sensitivity. but it isn’t sensitive or caring to simply ignore difficult stuff. and speaking from my own experience, when my difficulties are silenced, they shout so much more loudly. they bash on walls and doors and cry out for acknowledgement. which makes it hard work to hear anything else. i assume there are radio listeners whose life circumstances are profoundly challenging who really do prefer broadcasters to present an idealised, sanitised world. but there are already plenty of stations catering for them; i want my favourite station, which identifies as “alternative” and “eclectic”, which is seen as john peel’s direct legacy, and which, reading between the lines, aspires to a heartfelt kind of right-on-ness, to expect more from itself, and to reach out to me and my kind. please, radio 6 – return the favour – listen to us.
limb by limb and tooth by tooth
tearing up inside of me
we are currently witnessing a heatwave here in the uk. these extreme conditions are bringing back all sorts of scrambled reminiscences from former very hot weather episodes. memories of sliding over and over again off the same flat rock on a beach in cornwall into the clear cool sea. (this was in the summer of 1976 when it stayed hot for what felt like forever, and at one point the ground of our local churchyard was covered with hundreds of thousands of ladybirds). earlier recollections of groups of neighbourhood children running in circles around our garden for hours, while my father sprayed us with the hose until our ears were half-deaf filled with water and the grass sucked and squelched under our feet.
how i ache to slip from a perfectly smooth rock into bracingly chilly water now. or to race across sand baked so hot it scorches the soles of my feet, keep on running until the sea slows my limbs, keep going on till a wave breaks over my head. for my skin to taste of salt on account of spending hours cavorting in the sea, rather than because i have been struck motionless as a statue and dripping with fevery illness sweat for centuries.
my ME has been worse for a few years now. i’m not sure how many exactly; i try not to count. i have a tendency to describe worse patches as “phases” or “patches” even when they go on for extended lengths of time, since these words make them sound transitory. this is to do with the continuing balancing act which i’ve attempted to illuminate in previous posts – my ongoing determination to not get so deeply swallowed up by all my symptoms and disabilities that i risk forgetting who i am apart from, or alongside, them.
it is bewildering to realise that when i talk about stuff i used to love doing before i stopped being capable, i am talking about half my life ago. (at least, half of my life in linear measured time. given that my experience of perceived time is that it speeds up and up at a pace which has become comically alarming, not half in felt time. though i’m not sure this helps).
there is a peter sellers long playing record my parents probably still own. me and my siblings thought we’d entered a parallel universe when we discovered it as young children, we were so thrilled by its irreverent anarchic humour. on it there is a sketch involving a character called auntie rotter who broadcasts a childrens’ hour type radio show. at one point she encourages her young audience to hide behind a door with an axe and chop their father in half when he gets home from work, so that they’ll gain the advantage of having two daddies!
i’d like to be able to chop myself in half. to cleave the fully operational parts of me from the diseased malfunctioning elements. i’d like to slice bone from ligament and tendon from muscle with a fine scalpel. most of all i’d like to cut out the bits of my brain which cause so much confusion. which jumble and disperse the letters when i try to read for more than a couple of pages. which make it impossible for me to write for hours on a regular basis. which create such profound exhaustion that i have to stay in bed for much more of my time than i am up and about. i’d like to excise the bad. deep clean on a cellular level.
it is maddening to have to scratch and scrape around at the bottom of a well to garner even a tiny quantity of lucid thought. waiting for my brain to start working reliably is a wait too far with no likely end in sight. so i sit down in front of the screen to try to type with a mind halfway somewhere else, and limited oxygen supply. and i think – what do i need to do in order to write something i consider worth writing? first i need to get my head straight. but i can’t begin to guess what that might look like.
when non ME friends have asked what brain fog feels like, i usually describe a large rickety house with lots of rooms and long narrow hallways. to reach any of the rooms it is necessary to navigate at least one of these extensive hallways. all the rooms are lit, but most of the time most of the rest of the house is in shadow, and you can hardly see where you are going. each room contains a precise train of thought or some clarity of vision. when you arrive in one of these rooms and spend time in it, you know what you’re doing and why you are there. but all your other clear ideas reside in other rooms whose doors are closed – you have no idea how far away they are, or how long it might take to get to any of them. and once you leave one room you immediately depart that comfortable space where your mind makes sense. you lose touch with all that certainty and are plunged back into befuddlement. you feel dim most of the time. so while it might seem to your friend as if your head is straight and your thinking makes sense, it isn’t and doesn’t. for twenty-six years nothing has joined up in the way it used to before i was ill.
i can’t go on. i’ll go on.
after i’d spent some time sinking down deep, right down to the bottom of the ocean, several years ago, i made a decision. i resolved to try to swim, or at least remain buoyant, for the time being.
back then i didn’t feel sufficiently courageous or integrated to dare to consider what “the time being” might entail. simple activities such as carrying on breathing and eating were so challenging that extraneous concerns were beyond me.
mostly that keeping on keeping on decision was based on caring about how people who cared about me felt, and not my own behalf. the whole period is hazy in my memory, like an out of focus silent black and white film viewed from a great distance. my only clear recollections involve small windows of bright light, colour, and clarity breaking through the cloud cover. i remember the ferocious protective love i experienced for the children who were dear to me. and i remember brief flashes of being intrigued by the world beyond my own existence; mini-breaks from self-obsessive nihilism.
specifically, i remember watching a documentary. today i have absolutely no idea what it was about. but i recall that at the time i was suddenly overtaken with curiosity regarding its subject matter. and that when i registered that i was engrossed in contemplating something outside my own miniscule universe, i thought there might be hope of better times ahead. from that point on i determined to act as if my being here mattered, despite my persisting conviction that it didn’t.
to my surprise those windows of clear colour and light gradually widened, and i slowly became more emotionally connected to the outside world. which is why, when i have episodes of sinking low nowadays, i favour the maxim “fake it till you make it”. (by fake it till you make it, i mean continue practising simple actions to do with keeping body together – things such as washing, tidying, and eating nutritious food – continue to do those things despite the fact that your whole being rebels against them. when consumed with lowness these actions don’t only feel counter-intuitive; they feel like a body blow insult to our overwhelmingly destructive drives). if anyone had advised me to fake it till i made it when i was younger, i would have balked at the notion and felt misunderstood. but time has told me that it works.
the public disbelief and lack of understanding of my illness continue to be capable of knocking me off my feet. and when i’ve reason to suspect that someone who truly matters to me might think ME is not a real physical disease, i am still crushed. these are times when i need to re watch the film “unrest”, or to connect with jennifer brea and her supporters on social media.
scent can transport us to another time of our life in a split second. more than a decade and a half later, i am still intermittently haunted by the bitter, chalky reek on my skin and in my nostrils of an overdose after coming off a twenty-four hour antidotal drip at the hospital in brighton. and, as an unexpected side effect of stopping smoking, my already extra strong sense of smell became temporarily overwhelming. everything stank, even supposedly pleasant aromas. i was brushing my teeth when that re-stench of overdose hit me full frontally, and for a moment i was back in the royal sussex hospital, debating my possible demise with a doctor and nurse.
these days i’m mostly managing to keep my head above water. i’m not exactly swimming – that would require energy i don’t have access to right now – but at least i am not drowning. hey, you on the shoreline: do you see me waving?