time. and time again.

“various things change you as a person and a writer as you age. you think more about time and memory; about what time does to memory, and memory does to time”
julian barnes

”everyone is saying ’i can’t wait to get back’ and i have to say i don’t think we will. we won’t go back. it will be different and it will be something we don’t understand right now”
darius marder

i have written before about how i find it impossible to get a clear sense of how my illnesses have behaved and changed over many years, and how this inability troubles me. i explained that up until a certain point i was able to hold on to at least a rough impression of the trajectory of my ill life. part of the confusion comes from the fact that my ill life has coincided with most other things about my life, making untangling illness from life or life from illness pretty much impossible. memory slips and slides about and becomes increasingly effortful to gain purchase on the more i struggle to pin it down. i feel driven to get a firm hold over my memories, as if achieving that would result in my having a stronger sense of my own existence.

when i have a lot of low energy or “crash” days in quick succession i soon begin feeling like i don’t exist. when this happens i ask friends for reassurance. ”am i still part of the world?” i enquire, or “do you think i am still a human being?” i recognise that i wouldn’t base anybody else’s human credentials on what time they had to stay in bed till, or how often they ventured out. it would be a tremendous relief to learn to believe that i am here without the need for regular proof. i know some people who say they never wonder if they exist, and some who assure me that it has never occurred to them to question their entitlement to be here. this is astonishing to me.

there are days when i am hanging by a fragile thread. i am broken into uneven fragments which are held together in no particular order by pieces of sticky tape and bits of string. there are days when i wake up to find that this fragmented state is where i’ve landed; i might not have been in that space when i went to bed, and cannot explain how i came to travel there during the night. it is as if i was carried into a different room while i was asleep. the new room is in exactly the same position in exactly the same building that i rise in on other days, yet it feels as if it is in entirely another universe.

some time ago, i don’t recall how long, maybe three or four years ago, tiny plasticine models would regularly appear on the outside windowsill almost directly opposite the door to my building. they would always come in pairs and arrive when no one was looking. i wish i had taken photos of all of the ones which i spotted. for a time i suspected that a chap i know who used to work in the shop next door to my flat was responsible. they seemed to be his sort of thing – playful and witty and enjoyably nonsensical. but when i asked him he said they were not his work. anyway, last weekend two new models in the same mould (ha ha) appeared. it was long enough since their previous manifestations that i’d forgotten that they had ever existed. the return of these little creations needn’t logically have any connection to lockdowns ending or folk acting as if the pandemic is over, but because the arrival of this recent duo coincides with all kinds of behaviours which illustrate what commentators seem to be contractually obliged to describe as ”going back to normal”, and because before they arrived i hadn’t seen any since pre-covid times, my mind connected them with whatever historical period our nowadays might turn out to be. there have been aspects of life transforming since “freedom day” which i have found incredibly disconcerting and others which i had imagined would feel strange and uncomfortable but haven’t. as current times are so bewildering i am going with my impression that the return of these examples of tacit communication is a rare, joyful aspect of humanity transitioning into whatever our next (hopefully ever so not normal) phase turns out to be.

returning to the matter of life trajectories, i haven’t always been aware of the fact that some people go through their life with some kind of overview and others don’t. i think what i mean by having an overview is being able to access information about other states of mind from the one we are in right now. so for example, when i am not depressed it is easy for me to remember how i feel when i am depressed; in fact it is too easy, in that if i spend more than a very short amount of time reminding myself of that mood-space i risk recreating it so convincingly that i return there for a while. this overview idea is complex to write about because it is too easy to convince ourselves that we see things a lot more clearly than we truly do. i’ve been overwhelmed lately by reflections on identity, memory and the passing of time. something is going on with my memory which rocks my world. i don’t know if it is a symptom or consequence of being my age. i keep thinking of homer simpson declaring that every time he learns something new, it pushes some old stuff out of his brain, because that is exactly how my current memory crisis feels. i can’t work out if it is because 55 is a neat number in visual terms, but i keep repeating this daft chain of thought where i say to myself: i feel befuddled and foggy of mind, and this must be because i’ve reached this palindromic age, and when humans get to this age their mind is so full of all the memories and thoughts and ideas and quotes and everything it has ever witnessed that it has necessarily run out of space for new information.

as i said, the more i fight to pin thoughts down the more slippery they get, and my crusade against retreating memories becomes part of the problem. i get bogged down in fear of lack of clarity and that fear takes over and stupefies my mind. it blocks any flow which might help me find my way out of the labyrinth. i’m engaged in an ongoing internal mental tug of civil war.

the model citizen and me have a running joke about me wishing i was him. it is only partly a joke, in that in many ways i do often wish i was more like him than myself. we are agreed on the fact that his life is measurably easier than a lot of other people’s lives in terms of his material circumstances and his temperament. i said once in this blog that i am temperamentally averse to an easy life, and that is true. i find it impossible to let myself off the hook. the model citizen certainly struggles with a few sticky hooks himself, but nonetheless the inside of his mind is a friendlier and much simpler location than the inside of mine. one glaring and infuriating example of his blessedness is that he has been happier and more at peace since his memory declined quite dramatically a few years ago. from the outside it is impossible to tell for sure whether this is because of his almost relentless tendency to look on the bright side: in other words, it is a choice of sorts; or is it just another example of how simply by luck his eggs always end up perfectly cooked?

tyger tyger

“I don’t want your hope. I want you to panic, and act as if the house was on fire.”
greta thunberg

some time last autumn in between lockdowns i went to the local cinema to meet some friends. there is plenty of outdoor space and seating in the cinema’s garden, and it is a good place to get together in a socially distanced way. the federer fan drops me off at the front entrance and i make my usual slow, halting way, flower-decorated walking stick in hand, towards the building. an intense looking young woman is standing close to the main door, apparently waiting for her friends to join her. this young woman is eyeing me in a disconcertingly direct fashion. she seems to be lost in her own thoughts, yet is simultaneously locking her gaze with mine. i have the sense that she is familiar, so i wonder whether perhaps we two know each other and i’m acting unfriendly, rude even, by not waving or smiling. i try out a hesitant smile, which has no noticeable effect; still the person holds my gaze, and by now i’m beginning to feel properly discomfited, increasingly certain that i must be in her bad books for some unknown reason. my snail-like progress means i have longer to consider these strange circumstances than a non-disabled human would. it is only when i am within spitting distance of my mysterious observer that i see that she is in fact a weirdly lifelike and true scale model of greta thunberg who is there to advertise the new documentary about greta which is currently showing at the cinema. i enjoy the idea that this human who is so charismatic and impressive in actual life has succeeded in getting me to question my sense of reality simply through the presence of an artificial representative of herself. what power!

i am not comfortable discussing my individual experience of the pandemic and how it has impacted on my life without pointing out that i strive to keep in my awareness all of the ways in which it has affected everyone else in the world. a lot of the time i don’t feel entitled to say anything: nobody i love died from covid; i was spared the agony of friends or family being hospitalised for weeks or months; those i know who had covid seem to have recovered. when i talk about my personal experience of the past year and a bit, i am not forgetting that many people have died and many are grieving the loss of loved ones, friends, and family members. others have long covid, and some of these patients will join the ranks of people like me who don’t recover. i am endeavouring to be as mindful as i can regarding the suffering and trauma of every human. i have felt connected to a profound sense of universal sorrow and loss in the past sixteen months. while this is an uncomfortable and at times overwhelming emotional space, there is solace in it. i met someone new the other day, a friend of my friend the zen master, and she described having been in exactly the same space herself. it was remarkable to explore such deep emotional territory with a stranger – talk about cutting out the small talk! – and i suspect that this mutual openness could be partly a consequence of what we have all been through together and apart.

additionally, recently i’ve become conscious of ways in which i and those around me have been affected and which are only just beginning to declare themselves; hairline cracks in our infrastructure leading to wider fissures hidden away beneath our floorboards, furniture, and rugs, aka a “tsunami” of mental health problems.

the first lockdown was adhered to religiously in my neck of the woods. apart from ghost buses floating past regularly, there truly was no traffic. i learnt to notice sounds i’d not heard before; details of nature i hadn’t seen before; architectural minutiae which had always been visible, but without lockdown the very air was too crowded with traffic noise and people and their presence and their voices for me to glimpse a view. some friends were astonished to discover that i prefer the world emptier. “but you are so gregarious, you love people!” they exclaimed. and i do, i really do. but mostly i love the company of one person at a time, or at most a large handful. when i look back on this episode it feels like a dream in which time stretched out and became more giving and flexible. the humans we did see weren’t in a hurry, and almost all of them were inclined to share a friendly greeting. i met people who i must have passed by before, but thanks to lockdowns i now actually know them. there was kind-hearted acceptance in the air. in hindsight i see this period as a mirage when something close to utopia visited my little part of the world. i felt so tender towards life and my fellow humans. i am certain that this space which was right in front of us, close enough to touch, will never visit again. even if another pandemic comes soon, or a terrifyingly contagious and vaccine-proof variant of our current virus arises, and even if governments make the same decisions about keeping folk inside their homes, i cannot imagine that brief taste of paradise returning. you don’t get a chance for mass redemption more than once in a century, surely?

as i was saying, in these lockdown times i found this unexpected peace and air. it wasn’t only that the world slowed down to a pace more akin to my own, though that was certainly part of it. it was also not just that for the first time since i became disabled i did not feel like an outsider on account of what i cannot do. and on top of not being reminded on a daily basis of how different my life is, and of all the things “normal” people are rushing around doing which i am not, it became clear that these able-bodied, well, busy, people to varying degrees managed without their foreign holidays; they managed to attend meetings and conferences without flying halfway across the world. here was convincing evidence that a simpler, slower, and more sustainable way of life was possible. and idealistic idiots like me and a few of my not sufficiently cynical friends started to talk about the dream of far fewer aeroplanes and cars being an achievable reality for the future. here was the perfect opportunity to make radical and lasting change to the way we do things. a global catastrophe was taking place and we could use its consequences to create something beautiful. the world had ground to a halt in all kinds of ways; this moment could be our jumping off point. rather than being hell-bent on getting back to “normal” as soon as possible, where normal means tweaking details of how people move around the planet, or produce and transport food, or run businesses, and aiming to achieve zero carbon by 2050, we could transform the way we live from now on. we listened to brian eno and yanis varoufakis discussing these political hopes. and our hearts soared. we were among fellow visionaries who weren’t acting like we were crazy to contemplate a more intelligent, intuitive, connected way of being.

it is hard to convey how beautifully promising this newly-spied potential path looked to those of us who liked the idea of it. and it is hard to describe, from where I’m sitting now, how foolhardy-dangerous it feels to have allowed our hearts to soar like that. for it turns out we were crazy to dare to imagine human life behaving more intelligently on its own beautiful, intelligent, generously forgiving planet.

so the dream shattered, and our hearts quaked. they sank a little lower inside our chests. and that’s where they will have to live from now on.

***

regarding the aforementioned tsunami, i want to thank reece shearsmith and steve pemberton for drawing attention to the preposterous new craze for describing “mental illness” as “mental health”, as per episode 4 of series 6 of the brilliantly original and endlessly inventive tv show “inside no. 9”. as a natural pedant nothing gives me greater pleasure than another pedant pointing out one of my current linguistic anomaly preoccupations. thanks chaps!

covid times: the wait of expectation

“there are plagues, and there are victims, and it’s the duty of good men not to join forces with the plagues”

albert camus

when the thin man took me to get my first dose vaccine about a month ago, it was like going to a party. volunteers whose role is to chat with the about-to-be-injected and allay our fears and keep us in line were marvellously cheerful and friendly. two buskers performed 1930s and 1940s songs alongside the queue, and this evocative music was a perfect accompaniment to the atmosphere of comradeship and promise.

this cheering ambience did not alter the fact that i was terrified about my vaccine. historically some people with ME have not fared well with inoculations, and some have even had their ME triggered by a vaccination. i did very badly many years ago (pre-ME) following a typhoid injection. therefore i had only truly resigned myself to going ahead with my vaccine a couple of weeks before i got the text offering me my priority group 6 appointment. i didn’t resolve to have it done because anything i’d seen or heard or read had reassured me that i wouldn’t experience ill-effects, but because i had come to believe that it is the right thing to do morally and socially. i had started to see that if i didn’t take the vaccine some friends and family might be very uncomfortable with my decision, and that others might even say they didn’t feel safe about hanging out with me. and it certainly made a positive difference that most of the ME people i know online were planning to have their vaccinations, and indeed that many of them wanted theirs asap. another factor which pushed me towards going ahead was a simple “which would be worse?” question: taking the needle held some unquantifiable risk in terms of potentially making my ME more severe for an unspecified time; but how much iller, or possibly deceased, might i become if i got covid? that reckoning clarified my dilemma.

many things on that afternoon in february felt good, auspicious even: sunshiny blue skies decorated with a variety of interesting clouds, following a week in which temperatures had dropped so low that the dwp saw fit to give me a cold weather payment of, wait for it, £25; all the friends and acquaintances we passed en route to the vaccine centre and back; the unexpected delight of seeing my lovely gp’s face for the first time since december 2019 (well, half or so of her face – enough of it at least to identify her with confidence); and the pleasing coincidence of my gp herself delivering my injection. and once i’d had the needle in my arm and the magical stuff was inside me, i was able to cease arguing with myself about the relative wisdom or foolhardiness of my choice. i handed myself over to fate. which is not to say that i wasn’t overly watchful regarding my condition. (i used to be a fully signed up member of the hypochondria association. but when i got suddenly severely ill with ME i left this behind fairly swiftly. it seems odd, yet at the same time strangely logical, that devastating disease can cure the haunting horror of hypochondria. nonetheless, the day after my vaccine i watched my body’s behaviours far more closely than i usually do). in hindsight i’m now convinced that the feeling a bit more shaky than usual was the result of anxiety over the injection, and not the injection itself. so apart from the arm-ache which still hangs around (in people with ME minor symptoms can take months or even years to pass, and some such symptoms never go) my only reaction of remark was a strong and unfamiliar taste at the back of my throat, accompanied by an identical odour high in my nostrils. this sensation dwelled so deep inside that i needed to focus attentively to pin down its constituent parts. eventually i characterised it as: more alkali than acid; something vaguely medicinal reminiscent of our family gp surgery when we were children; new car interior with sun shining on, and heating up, faux leather upholstery; swimming pool chlorine; an edge of recently sanded off old gloss paint; and a top note of germolene. though not unpleasant in itself, like other odours which take up residence and dominate my awareness for a few days, it is so present that it is distracting. but i am grateful for it, interpreting it as proof that something new and other and hopefully good is integrating itself with the rest of me. the taste-scent also comes to symbolise my relief that this strange and apparently unreported side-effect is the only one i experience.

the thin man had his first dose vaccine a few days ago. to my surprise he wasn’t at all nervous about it, despite his tendency for flights of fancy regarding medical matters, aka mad science. i am indignant that he is given a printed sticker congratulating him on having had his jab that day. why didn’t i get a sticker? it seems possible that the answer is that his was the astrazeneca injection, whereas mine was pfizer biontech. after you get a dose of pfizer you are given a tiny plain sticker with a time handwritten on it. the time is exactly fifteen minutes after your vaccination. then you are asked to sit in a large marquee with lots of other recently injected people on chairs two metres apart for the designated fifteen minutes to make sure you don’t go into anaphylactic shock (or that if you do, a medic is close by and will provide immediate assistance). no similar precautions are indicated if you receive astrazeneca’s creation. maybe you get the printed sticker after your astrazeneca injection to convey a sense of occasion which might be lost given that you are allowed to leave immediately after getting your inoculation. around midnight on the day of his vaccination the thin man suddenly becomes dramatically and disconcertingly ill. at one point my hot flush complicates the question over whose temperature is doing what. but it quickly transpires that while i can feel that his outside is burning hot, he feels as if his insides are freezing cold, and he has all over rattling body shakes. his top teeth are clattering violently against the bottom row. he has seen me in states like this many times, but i’ve never witnessed him laid so physically low. i put the thin man to bed with paracetamol and extra blankets, and by early morning his startling reaction has altogether passed.

6EVNUZBM

“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.]

mindfield

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.

two trees and nineteen corvids

DSCF0048

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.

as the years go by, i never stop being in pain for all the ways in which i cannot be myself. even though some faltering kind of acceptance took up residence a long time ago, and continues to develop, the fundamental pain stays, and becomes an unbearable aspect of day-to-day life which i struggle endlessly to bear. as a human being i don’t feel unusual that my life involves so much suffering. but i do feel unusual in this experience in my home town and in the accepted description of my national culture.

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.

the upside down

Image result for nevermind album

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.

insides out

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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.

this fall various things fall apart

hot off the press!

Rouser 2012

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!

imposter syndrome 2: nominative determinism, or indeterminate nominatism

 

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.