“it’s a little lonely in the desert”

antoine de saint-exupéry

i thought i knew this state and all of the ways in which it could impact me. i thought i knew a lot of things until recently. my mind has turned against me and almost all certainties have fallen away. i have been pared back to my bare bones. i find myself unmoored somewhere in a desolate no-man’s-land. space and time in this place are baggy, sagging, and nebulous: i cannot locate its boundaries, and gravity doesn’t operate in the traditional way. yet i am squeezed and cowed, bent over and forced to crawl on hands and knees. i wish to rise up, stand straight and step out of this arid, barren environment and to find myself back on the friendliness of familiar territory. to know the ground beneath my feet and to regain the comfort of calling it home. oh home, i miss you.

i need to trust this little pale orange teardrop-shaped piece of pharmacology to remake me whole. i put my life in its teardrop hands and pray to it every evening. help me, please. please be the one who knows what you are doing. weave your route through my broken synapses rewiring as you go. please do me this kindness. be the multicoloured blanket which wraps about my shattered frame to make me warm. show my cracked mind how to reform itself. tiny magic pill, work your magic. i have no other ideas. a system change, a step change, a meet me in the morning with a smile music box. i offer daily drawings to try to show that i am here. i made this thing, and then took a photograph of it as evidence. she must be here otherwise this picture would not, could not, exist. the drawings prove that these objects: furniture, framed paintings, plants, fabrics, are all still here. they don’t make their usual sense or displace air in the way they did, but persist in form and visibility nonetheless. ordinary times are absent for now. oh ordinary home, i miss you.

“illness strips you back to an authentic self, but not one you need to meet”

hilary mantel

thank you hilary for being the original bridge builder

if you go along with the concept of linear time

and i bet you do be do be do (who wouldn’t?)

then you basically travel forward through your life

and it can’t be possible for what has happened to me to happen to you.

it just can’t.

you can’t have fought to endure thirty ill years,

only to find that you’ve managed to describe

this crazy snakes-and-ladders inspired not-circle

and landed right back at the beginning again.

***

here comes the puppet master, the shredder, the metal head, in his broken-nose-profiled helmet and clanking suit of armour. i smell him before i spot him; his ferric tang hits the back of my throat. he has elongated pointing fingers and knows which buttons to push, and the broken places inside me which i’m trying to ignore reactivate to the command of his magnetic malevolence. he and i are doing battle, caught up in repeated wrestling bouts. he knows where they store that winch by which i can be manipulated, and he is prosecuting a metallic revenge, turning its handle so that thick rusted twisty lengths of metal cable get wound at some times tighter and at others looser within. winding up my hands, legs, arms, and torso. he sends in his army of invasive tin demons. they scuttle through my limbs, robot cockroaches reinforced with spiky protuberances which catch against my bones and ligaments, chip away at them, and render my insides all corners and rectangles. the most powerful weapon in his arsenal is a heavy iron portcullis which he lowers behind my eyes. it has the effect of cutting my functioning thoughts off from my awareness.

i find myself ambushed by geometrically shaped emotional spaces, at some points stuck inside the pipework and at others trapped within walls. i need to find ways to adapt to different shapes of symptomatology and experience. i need to do this to hold on to survival, and to my very self. it is exacting and enervating to continually inhabit constricting tubes, rectangles, and squares, striving against them in attempts to redefine my familiar edges.

before i was put under house arrest i had strategies i knew how to access and use. escape hatches leading to wide open spaces where i can breathe and see clearly and the stuff which weighs me down lifts away and evaporates for a time.

***

i am not really here. can you leave a message? i hope to return soon.

***

the shape i am most concerned with is a bridge. i want to build one in order to link who i was until a few weeks ago with who i am now. i also require this bridge to connect to you out there in the world. it will need to be a bridge i can believe in: solid, steady, and completely reliable underfoot.

this being far more unwell physically leads ineluctably to a depression which crushes my spirit. i am a scrappy bit of paper and it folds me into small sections covered with oily fingerprints and pushes and presses me into a matchbox. somebody has shoved that matchbox into their trouser pocket and unbeknown to them is carrying my spirit around. i hope i won’t have to wait too long for it to find its way home. i hope they don’t put it in the laundry by mistake.

i am woken by urgent diarrhoea. i rush to the loo, and after i’ve been to the loo a few times i try to take enough of the correct kind of medication to persuade the diarrhoea to quieten down for a few hours. this gets harder to achieve as time goes by. my days are progressively dominated by diarrhoea. often i don’t want to eat because it is so tedious and effortful having diarrhoea all the time. food is my enemy. then there is the peeling skin on my face, plus the adjacent spots and blemishes. then there is all my hair falling out, and there being less and less remaining.

each of these experiences is undermining. demolishing. being a woman who is going bald. being a human who is increasingly held to ransom by diarrhoea for which thus far i have found no predictably successful treatment. having acne and skin on my face so dry and peeling that i need to spend time each day removing enough of it to feel ok about being visible to other people. in all of these ways my physical manifestation is materially falling apart. like, literally. this body which has carried my self around has never felt that friendly or dependable a lodging. from age fourteen when it began bleeding monthly it caused me so much pain that i regularly vomited, and i became reliant on pain medication of gradually building strength. if i was a hermit crab who gets to rehome as it goes along, i’d have chosen different quarters. a shelter i could count on.

but this current energy crash of which i speak is seriously fucking with my shit.

one of the things about being obliterated by depression which is so unbalancing is that you, the depressed person, apparently seem about the same. others report that you look and behave just as you usually do. you act similarly enough to convincingly appear as though you are still here with everyone else. but you are shipwrecked elsewhere. in fact you are smashed into pieces and your constituent parts strewn across jagged rocks on a different planet in another universe. much of the time it is beyond me to be this physically destroyed without being severely mentally ill as a direct response. inconveniently, my mind and my brain both live inside the same container, and one cannot help crashing when the other fizzles out.

i feel like i am running a small psychiatric unit on which i am all of the patients and every single member of staff.

***

can you send a search party?

“stop making sense”

talking heads

i am bemused when people who are accustomed to being well become ill and protest that they hate being ill. they don’t realise that everyone hates being ill. “ill” is not a personality type.

there have been comments on social media lately about how patients who’ve been gaslit for years tend to experience shame over their symptoms. initially my stupid mind thought: yeah, but this doesn’t apply to me. then i reflected for a moment, and realised that since i got ME in 1992 i have never not felt ashamed over a number of my symptoms. how crazy that in the first years of my disability i was embarrassed that i didn’t conform to people’s ideas of what a disabled person looks like. there were many occasions on which, when i got out of my wheelchair to walk a short distance to go into a shop or pub, strangers would make hilarious jokes. by far the most popular was “i must be witnessing a miracle”. one result of my discomfort regarding such jokes was that in those days i regularly feigned moving around more shakily and hesitantly than i truly needed to in an un-worked-out attempt to appear convincingly incapacitated.

i saw a footballer called troy deeney, who is campaigning for the compulsory teaching of black history in english schools, on the news recently. he described how as a black man he had been treated with racist bigotry throughout his life. at school. in the street. and he said about this experience, in a tone which implied that this is somehow ok, “that’s life”. and i was thinking: how shocking, how reprehensible, what must that be like, to be persecuted simply because of who you are. then i remembered that i know what that is like, and recognised the “that’s life” ordinariness of the experience. the wheelchair jokes were undermining since the joker behaved as if his (and it was, now i think about it, always a man) desire to demonstrate his wit took precedence over whatever i might feel about my disability. then there is the outright, bare-faced abuse: like being told that i don’t need a wheelchair: like being told that my illness doesn’t exist (including by a physiotherapist who had been employed by the nhs to “treat” people with ME). there is the new age persecution (new age people hurl unwanted advice at ill folk as if the unsought advice were missiles), such as being informed that if i wish to be well i could simply choose to be well, and that my continuing to be ill is proof of some spiritual or emotional deficit on my part. today i note the paradox of my having in the past felt shame which resulted in a barely conscious effort to walk in a more disabled-appropriate fashion for the benefit of potentially ableist strangers, in contrast to my current shame resulting from how unavoidably visibly rickety my walking is now. i can’t cross the road unassisted at the moment, and my overriding emotion about this, ahead of frustration or impatience, is shame.

since my mother died (which is one of the things that happened to me last year) my mind is a more than usually unreliable part of my life. i’m not claiming that i haven’t been questioning my memory, my perspective, or indeed my fundamental sanity, always. when i was about eighteen i read an obituary of a woman who had died in old age and who had suffered from a lifelong terror of going mad. i recall my young-personed astonishment that i wasn’t the only human who endured this affliction. one of the unfortunate consequences of repeatedly doubting the integrity of one’s own marbles is that the level of self-interrogation involved keeps throwing up evidence which implies proof. minds are tricksy beasts. currently i grapple for straightforward terminology, lose the names of albums i have known since i was a child, the names of actors who feel like old friends. i curse the prevalence of prevalence – there is so very much of absolutely everything, and i am driven by my foolish mind to know more of the everything than my brain/nervous system is able to accommodate. in the good old days, when children’s animated films were drawn by hand, it took so much work and time to make a film that we only had to remember the name and plot of about one new film a year. in the good old days, music of the sort which i love hadn’t been around for that long, so there simply weren’t that many records to listen to and recall the titles of. in the good old days there was a great deal less of almost everything. plus we didn’t have the internet and therefore couldn’t look up every single actor, film, song, album, lyric, dead spy, unknown word used by will self in an article, medical term, geographical location, and potential astronomical occurrence (there will probably be an interesting supernova some time soon but we can’t say when. is it helpful that i am trying to hold on to this piece of information [if you can call it information exactly] on top of the names of all the records i’ve ever loved?)

i have referred before to my outrage when the model citizen declared that he has been even more content since becoming far more forgetful. while he luxuriates in the bliss of a decluttered mind, i have been battling the threat of lack of mental clarity for as long as i can remember. i stood before the shelf of beginner learning-to-read books at primary school and thought: i will never be able to do this thing which is the main purpose of our attendance at this place; i will never be capable of translating those mysterious shapes into sounds and ideas with meaning.

meaninglessness is always right behind me, just out of sight, menacing and mocking and snapping at my bad-at-walking heels. the vocabulary itself has so much power over me that these words “meaninglessness” and “mocking” blow through me like a gale which removes my centre in one tidy piece, then sweeps off taking my bearings with it.

i find to my surprise that despite this dislocated state of mind there is an ongoing sense of being. i continue to be aware, or to believe that i am aware, that i am here. i guess the thing which i am most afraid of losing is an essential belief in continuing identity.

and there is a contrasting space which i wouldn’t have expected could go alongside being so confused and forgetful, a transcendent witnessing place. i sit on my roof garden to listen to and watch the birds. for a while my awareness is completely taken up by the birds: their song, their wheeling, their windsurfing, their flapping. they alight on unleafed branches of a tree and busy themselves for a while, then suddenly take off in a disorganised whirr of spiky feet, feathers, and squawking. i watch and listen. at one point i close my eyes and inhabit a soundworld. the longer i do this for, the more detail my ears pick out: there is a distant electronic hum which might be created by a vacuum cleaner; there are a multitude of cheeps, squeaks, chirrups and caws from various birds in endlessly varying locations

– i am distracted by a troubling thought, that day’s favourite worry, and get completely lost in said worry for a short time –

but then i re-see and re-hear the birds: i tune back in to an enthralling world of vision and sound

– my second favourite current worry impinges on my attention and carries my thoughts off in another direction for a bit –

but soon the pure delight of focusing on the birdlife and surroundings overtakes me again

and after some time alternating between these two contrasting states of immersion and distraction, i notice that i am, quite without conscious intent, meditating on the natural world. i am moving between a deep focus on something outside myself – becoming distracted by personal problems for a while – then returning to deep focus. i’m in this profoundly fractured state, surrounded by pieces of paper, diary, and notebooks on which i’ve scrawled all kinds of random information in a random order, often interweaving totally separate subject matter – i’m in a giant philosophical muddle – yet in the midst of this chaos i have just inadvertently, finally, learned to meditate.

i was told once that the human brain is the consistency of blancmange. so we have this soft, horribly vulnerable, organ inside our skull, and this jelly-like blob has extension cables attached to it which lead off from one end to the other of our body, and as if by magic all of this neurological stuff within us communicates constantly. this doesn’t happen by any design on our part, nor according to the machinations of some outer puppet master: it just takes place regardless. this stuff which i spend so much of my energy attempting to control in some way, fighting to pin down, desperately wrestling to fill in the gap where a previously familiar word used to exist as if my life depended on it: in truth none of it has anything to do with me, other than by the chance of my having been born as this particular grouping of physical components. i don’t remember arriving in this world, so why do i work so hard at trying to imagine the circumstances of my departure: many of my dreams are concerned with attempting to identify the exact split second between life and death. as if having a clear mental picture of that moment might be of assistance during the intervening period. control. always striving to control this “me” animal, spinning about and whirling my arms through the air, clutching at words, thoughts, memories, half-written notes on loose pages of paper. this morning i wake before 5am thinking about world war three: i don’t recognise a song on the radio and can’t hazard a guess as to who it is by, and i chase myself around like a furious schoolteacher trying to swat and eradicate the offending fly of ignorance.

“the weight of dust exceeds the weight of settled objects”

robert wyatt

i sit at my usual cafe and watch the humans. how small they are: how vulnerable; how completely, wonderfully, themselves. how open-hearted tender i feel towards all of them. it takes a conscious effort, as if i am physically restraining myself, to not try to talk with any of them. i want to shout: you are amazing, i love you! but i sit in silence, watching. a gorgeous chubby-cheeked boy somewhere between baby and toddler sports a stylish mickey mouse sweatshirt and is overwhelmed with excitement at the sighting of two motorbikes parked outside. the bikers are right there, feet away, easily within eye and earshot, but fail to notice their adoring fan. this disappoints me very much, but not quite enough that i dare to point him out to them: they are so private that when each of them ventures inside to use the loo, neither says anything to the other; they just walk away in manly bearded silence. another customer makes her hesitant, lop-sided way into the warm interior. i notice anyone with mobility challenges because of my own limited moving-around-skills: my walking has been less reliable and my legs wobblier than ever since my booster vaccine. i only made my shuffling way to the cafe solo early on that sunday morning on account of there being almost no traffic, and because my psyche was in free fall. a council worker picks up litter with his litter-picker, apparently oblivious to the gaping hole at the corner of the council embossed bin liner into which he puts all the pieces of detritus. i am too shy to ask him all kinds of questions which preoccupy me: why are people more prone to littering since the start of the pandemic; why is dog shit, which had been virtually eradicated, now everywhere once again since the start of the pandemic; why does the council pay someone to pick up litter but nobody actually sweeps the pavements any longer; and how much do they pay him; and can i buy him a drink?

all these observations and thoughts lead to me repeating to myself one more time the question which frequently torments me: when individual humans are so resilient, so courageous, and so humour-filled, how come collective humanity is the ugliest most destructive monster?

***

i’m not familiar with the version of calm which visits before the storm. my calm invariably arrives post- and not pre-storm. in addition, the calm often takes such a long time that i stop believing it will ever come, so that its eventual appearance ends up taking me by surprise.

for me the experience of being alive is a repeating circle of psychological disintegration and re-formation. i fall apart over and over, and each time i fall apart i feel that i will never succeed in reorganising my self. i feel like reconstruction of my psyche is impossible, but decades of being alive have provided me with compelling evidence that there is always ultimately a route out of these emotional cul-de-sacs. i feel like i will inhabit this chaotic space of endless corridors cluttered with blind corners, distorting mirrors, and trompe l’oeil doorways forever; but i know that i will not. nonetheless it takes astonishing levels of energy to negotiate existing in this disordered emotional environment: it requires a feat of discipline simply to appear to be an integrated human; parts of me keep flying off into space, and i must continually wrap myself around myself to prevent this gravity-defying behaviour becoming visible to other people. i talk, i smile, i appear to have a rough idea what i’m doing; but there are passages, sometimes lengthy passages, when this is a well-rehearsed deception.

i guess this repeating pattern of dissolution followed by renewal is not how life feels for everyone – at any rate, if it is, a lot of people are keeping very quiet about it. to some extent i understand the wish to keep emotional mayhem under wraps: as i said, i work hard to disguise from the outside world when parts of me keep breaking away and hurtling off into the stratosphere. but some departures are impossible to hide. i keep thinking of the bit in “withnail and i” when pedestrians being knocked down by vehicles are mentioned and withnail cries “these aren’t accidents! they’re throwing themselves into the road gladly!” because my hair has been throwing itself out of my scalp gladly for over three years now, and it is increasingly futile to attempt to conceal its encroaching absence. one of my darling nieces has advised me to “just rock it” when i have no hair remaining. as she wisely pointed out, what else can i do? because of the ME my temperature regulation is so erratic that it will be intolerable for me to keep my head covered a lot of the time. i’m trying to write about this hair loss stuff despite the fact that whenever i talk about it (and it turns out that writing about it is way more distressing than talking about it) i feel turned inside out and overwhelmingly sick. but i must endure this nausea, since there is no escaping the fact that this is happening. and writing is how i attempt to instil order into chaos.

i never expected my life to go smoothly. many of the things which have happened to me which could be construed as misfortunes have not taken me by surprise. also i don’t feel indignant about the so-called bad luck: i look around the world, and i see that the vast majority of human lives aren’t going smoothly. neither of the two primary varieties of luck are personal. but there is something uniquely harrowing about this process of pointlessly losing my beautiful hair; and i feel daft and childish when i say it: but this i did not expect. i thought that i would go to my grave with my hair still attached to my head, and then enjoy its mythical continuing growth beyond my death.

*ref post from 21 november 2020

“there’s a natural myth about the artist that you sit in your room and wait for the muse to come. it’s exactly as much hard work as making anything that you make out of nothing”
stephen sondheim

“if you meet the buddha on the road, kill him”
linji yixuan   

lots of people are starting this year by sharing their hopes for it to be an improvement on the previous one. i understand this drive, but i’m extremely wary of it: it feels a bit déjà vu and a lot jinxxy. (if jinxxy wasn’t a word before, it is now. i’ve read susanna clarke’s piranesi and thus discovered the term “bouncible”. like anyone who doesn’t love piranesi with a crazy passion, you’d have to be a total idiot not to want to add the word bouncible to your lexicon. and i am now claiming my inalienable right to invent new terminology).

i know many who have had a truly dreadful time these past almost two years: those who had got to their seventies untroubled by mental illness but who ended up on psychiatric wards as a result of the effects of the pandemic; those whose mental health wasn’t great, but they’d found coping strategies and were teetering around the sort of ok mark, and who now feel like they are starting over with beginning to work out how to be here; and others still who seem to have gone quietly and irretrievably insane without anyone who might have been able to intervene constructively noticing.

last summer when we were allowed to invite friends into our homes again i realised that one of my new and weird mental illnesses was stockpiling ridiculous quantities of water in the cubby-hole off my kitchen. apparently i’d taken shortages of bottled water and delivery drivers (which are nothing to do with brexit. brexit is working out great and there are crowns on pint glasses again – phew) so seriously that i’d taken to piling multipacks of water on top of one another, creating a small mountain range of plastic-encased water. i’d like to clarify that this practice isn’t as pettily selfish as it sounds. my sinuses are so problematic that i have to pour huge amounts of water through my nostrils on a daily basis, and i’m not reconciled to passing whatever constitutes tap water in these parts (mostly chlorine judging by its troubling aroma) so close to my brain. after all, for the time being, it’s the only brain i’ve got.

on a brighter note, many of my number of chronically ill and disabled folk realised that we had developed superpowers over many years of solitary hardship. we came into our own. lockdown? no problem when you’ve already stayed indoors for more than half of your life. it was liberating to find our experiences finally become meaningful to people outside our community: at last we were the ones who knew what we were doing.

***

some things which happened to me last year:

i had three pfizer covid vaccines. thank you to those who developed the vaccines, especially oxford astrazeneca and johnson and johnson who sell theirs at cost, unlike pfizer biontech who have made $32 billion from charging £22 a throw for theirs.

i had a consultation with an astonishingly patronising and humourless doctor who told me that i am losing all my hair. he said that i could have a bash at “holding onto what i had left” by purchasing a chemical and rubbing it into my scalp for ten minutes twice daily exactly twelve hours apart every day for the remainder of my life. i found this an incredibly alienating notion when it was first suggested, and it hasn’t grown on me (ha ha) over time. i can’t imagine anyone leading a life so entirely devoid of spontaneity that they could fit this regimented double-rubbing-in of a chemical into all of their days. (actually i recognise that this isn’t true. i suppose that if i was in prison it is possible that my life might be sufficiently systematic for such a routine to be achievable. on the other hand it seems unlikely, if i did have the misfortune to be incarcerated, that i’d be able to rustle up a spare thirty quid a month to spend on an anti-hair-loss product). i have wanted to write about my hair loss for a while now but i find the experience so distressing, and most cultural attitudes so cruel, that i can’t bear to say anything yet beyond the fact that this is happening.

my blog hits increased significantly and went up by almost a thousand in six months. (declare yourselves, mystery readers!)

i discovered a new and deeply rewarding relationship with birds. when i say “relationship”, i realise that this suggests a degree of reciprocity: in fact i’m fairly sure that the birds don’t give a monkeys about we humans. though i live in hope that some of them might notice the bird-feeder on my roof garden at some point in the future. i spent a lot of time last spring sitting on my roof listening to the song of a neighbourhood blackbird. blackbird song became a transcendent experience, and i was sorely disappointed when i found out that they only treat us to it for a few months each year.

i tested positive for covid on the 25th of december. i discovered that it was emotionally complex to receive confirmation that i had successfully become infected with this thing which we had all tried so hard to not catch for so long. i also found myself in the extremely fortunate position of omicron manifesting in my body as an exact replica of the common cold. i’m grateful to have had my booster two weeks earlier, and to have come down with a variant which my crackpot immune “system” was somehow magically able to cope with. most of all i am astonished and relieved that i didn’t infect anyone else.

as a consequence of my pcr test result being positive i had a very nice conversation with an extremely pleasant chap from test and trace. i was surprised that he was discombobulated when i explained that i wasn’t prepared to give him the names and contact details of everyone – or indeed anyone – i’d seen in the week leading up to my positive lateral flow test. i told him that i’d already given all of them my news, that they were each taking the action they deemed appropriate, and that i considered giving a government agency my friends’ and family members’ personal information an unthinkable breach of their privacy. my advisor felt obliged to inform his manager of my allegedly unusual refusal, and his manager said i would be pronounced as refusing to cooperate on the form. surely i can’t be that much of an outlier in this regard? i still feel a physical repulsion low in my innards when i imagine handing over my loved ones’ names and numbers; the prospect seems a particular and peculiar form of betrayal.

***

one thing which happened to me this year:

yesterday i met god on my way to the cafe (this was during a brief detour from being en route to an appointment i really must keep in samarra). or now i come to think about it, he might have only been jesus, which is a tad disappointing. it’s hard to be certain, since he claimed his name is “tim”. at any rate, this fellow definitely had an evangelical glint in his eyes as he explained to me that he has “saved many lives” by convincing people to abandon their treatments by medical experts who did ridiculous things like prescribing appropriate medications and carrying out surgery, and how it is “up to people whether they want to stay ill or get well”. oh goody. how i like this conversation. i’ve had it many times. but i’m cross with myself because i became overwhelmed with indignation and used unspecific phrases like “a load of bollocks” when what i should have asked is “if you believe illness is caused by faulty behaviours or beliefs and is not a natural part of life, how do you factor in the one hundred percent death rate among humans?”

“the problem with the world is that the intelligent people are full of doubts, while the stupid ones are full of confidence” 
charles bukowski

sometimes we say “what if” when we are wondering what the future might bring. at other times we are conjuring an alternative past. in one context “what if” can imply a threat, or the coming true of an anxiety; in another it can be hopeful, even whimsical. one thing that “what ifs” never denote is the present moment, and i think this is the reason that i am instinctively opposed to them. our busy minds already make it hard for us to inhabit the here and now. as an avid fan of the present moment, i am inherently averse to ways of looking at life which make connecting with this elusive “here i am” experience even more challenging.

***

i used to listen to proper writers in awe. two of the things i heard them discuss which i found among the most mystifying and intimidating were multiple drafts and repeated edits. way back when the only writing i did involved filling lots of notebooks with repetitive, self-doubting nonsense, i found it impossible to envisage myself having a surfeit of ideas and thereby needing notes and drafts on all kinds of topics. on the matter of editing my own stuff, i simply couldn’t visualise what that would look like. but once i found myself creating this blog, i discovered that editing and re-editing take up far more of my time than i spend on constructing the original text. and while i’m on the subject of editing, i have to say that there is very little i enjoy about the new wordpress editor; mostly it has me bamboozled. one thing i do appreciate is regularly being reminded how many times i’ve revised the piece i’m currently working on. but i’ve just glanced to the right of this screen to check that information, and it is nowhere to be seen; like i said, i’m bamboozled.

before i started this blog i used to go around in circles trying to work out what kind of writer i am. i knew that i was not a novelist, poet, short story writer, or journalist; and knowing this made me suspect i was no kind of writer at all. it was only when i started my blog, and unconsciously pitched my words at an imaginary reader who vaguely resembled me, that i fortuitously found out what kind of writer i am. i am this kind. and i am relieved to say that i now count myself (on most days, at any rate) as one of those proper writers who have loads of drafts and notes, and who can while away an hour arguing with herself about whether to take out or reinstate an individual comma.

i am vicariously frustrated that so many people are still not engaging in the creative project, or projects, which they frequently refer to and suggest they are partaking in. or they are partaking, but only in a silent and secret way which involves no one else in the world witnessing their creativity. some of these people have been swearing they were about to launch said project for years or even decades. peter cook’s quote “i met a man at a party. he said ‘i’m writing a novel’. i said ‘oh really? neither am i’” comes to mind. i am so very grateful that i have found my cup of tea, and that i’m doing my thing; so glad to have overthrown my own previous not-writing, and to no longer be a member of the not-getting-around-to-it club.

***

and there are times when this blog feels like the only thing anchoring me to that fragile thread i mentioned: on days when i can’t get out of bed before it gets dark outside; on which i begin feeling like i don’t exist; and when the media seem to be forcefully hurling messages at me telling me that the important things in life are only to do with rushing about, travelling, procreating, and shouting loudest; and in response to these judgemental messages i become convinced that i am no more than another despicable bit of litter – i’m a discarded paper bag crumpled into an amorphous, dog-eared state, being blown around by a repeated eddying breeze in endless cycles with other bits of torn up paper, chocolate bar wrappers, used tissues, and grubby face masks. but then i remember that i am publishing this blog, inhale with relief, and my feet feel a tad closer to the ground.

***

apparently i’m an “empath”. at least a few people have told me i’m one. i couldn’t possibly say. i draw the line at being described as an hsp, or “highly sensitive person”; the federer fan once suggested i am one of those, when they first came into fashion, but he lived to regret it. the point is that i find it relatively easy to get how other people feel, and to put myself in somebody else’s shoes. but it has come to my attention that i am severely deficient in emotional understanding when it comes to fanciful notions – lately the topic of “what ifs” has risen a number of times: i heard a chap on the radio talking about his book imagining the beatles staying together for long enough to make one more album; an ME commentator who i admire made a vlog suggesting that all ME people have another life in which they imagine what they’d be up to if they weren’t ill; and i am friends with someone who has described to me how he has spent serious portions of his ill life inhabiting an elaborate dreamworld.

good grief! it seems that many people who are ill like me choose to spend significant amounts of their precious energy and time in a fantasy world where they arse about picturing how their life would be if they weren’t ill. as if being ill isn’t hard enough! why on earth would i use energy which i could be using to live my ill life as fully as possible torturing myself with a fabricated and unattainable well existence? that’s almost as crap as recommending to someone who is desperate for a live-in partner that they get a cat for “company”. i am certain that picturing myself swimming in the sea, or writing from dawn till dusk, or raising four bonny children, would not cheer me up. it would make me deeply, extremely unhappy. did these fantasists not get the email explaining how life is not a dress rehearsal, that you’re here for a fleeting moment, then bam! it’s all over, then nothing forever and ever amen? do they suppose that if they wish hard enough they will wake up to find themselves living a different life in a parallel universe? they look around the world and witness torment and suffering all about, and in reaction decide that they are about to start living a life of success and fulfilment…because what? because they are them? if not, if their primary motive for hanging out in their dreamworld is not some crazy kind of hope that they might end up permanently relocating to that place, the practice is even less comprehensible to me. in other words, my empathic skills are less wide-ranging than i’d hoped.

oh yes, also i had a conversation with my brother a few weeks ago in which i asked him whether he is concerned that there might be another, worserer pandemic in the not too distant future. he replied that he doesn’t think like that. later during the same chat my brother enquired if i ever think about what our lives might be like if our family hadn’t moved house when we were teenagers, and i replied that i don’t think like that. ever. i am completely uninterested in what ifs.

“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?

“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!

“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.

“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.]