the boy in the bubble

during the week when noa is finally born,

huge, and giving her mother a pounding en route,

i keep bumping into you around the flat

sat stock-still and wearing an expression

precisely halfway between spacey-stoned and zen master,

so that i can’t fathom whether you have suddenly got it

or are pondering eating some oreos.

we two have both had psychiatric meds coming out our ears

this past month.

i love your stillness, your buddha wisdom face,

and don’t wish to burst your bubble

by enquiring what’s going on.

2024

heading east, we overshoot our turn-off

and end up on an old-fashioned country jaunt

taking in wilmington, alfriston, and the view across cuckmere haven.

we spot a white horse on the hill above litlington

which i discover was cut in 1924;

today it looks all brand new.

i’m writing this with the red pen they gave me at the sanctuary in hastings

turning point, it says on the side.

i keep thinking of the film “perfect days”:

the beautiful apartment, its beautiful exterior,

koji yakusho tending to the baby trees he collects at the buddhist park

and plants in exquisite handmade origami newspaper pots.

since i was sprung from prison

each tiny liberty equals a whole planetful of joy:

crossing the road alone with my mobility aid;

hanging out at the cafe solo.

on my return i meet two tourists

photographing my roof garden. i thank them, and am ambushed by childlike pride:

i made that; i can do that.

proportional representation

my life is my message

gandhi

in twenty years will the people who currently get impatient/cross

when i mention the climate emergency

say you told me so?

will they wish they hadn’t got on so many aeroplanes,

or will they defend their choice to take recreational flights?

a lot of us are broken now. perhaps our best hope

is to own how smashed up we are,

inhabit the catastrophe

with as much consciousness as we can bring to the table.

residence in a psychiatric facility

is a good excuse for skipping the news.

there aren’t any words

paint drips

apostrophes

which escape your attention. (i only had six nights)

the federer fan asked why i thought “st george’s day” was a poem

rather than a prose piece.

the answer is i didn’t:

that is how it presented itself to me

who was it who said writing [poems] is like taking dictation

[c s lewis said writing] poems [is rather like taking dictation]

when jarvis asked leonard about his creative process

he eluded or elided the question

best not dig too deep into that soil

if some words arrive as a poem

if poems come as a by-product of the other kind of writing i do

who am i to argue.

the man said your life is none of your business.

redrawing boundary lines

image

“a writer is someone for whom writing is harder than it is for other people”

thomas mann

“say who you are”

charlie kaufman

i want to talk about advice, and how, in my experience, the giving of unsolicited advice has turned into an epidemic in our culture.

i recently engaged in a lengthy and laborious email debate with someone close to me concerning their habit of correcting my choice of words, and my delivery of those words. this person regularly shushed me, in addition to frequently telling me what to say, what not to say, and how to talk (usually, apparently, i should talk in a less animated way; in other words, i should be less like myself). i explained to them that i am prepared to take full responsibility for my words, and for my style of communication, and told them that I don’t want any guidance on these matters. to my surprise, this resulted in them accusing me of criticising them! after two further long and thoughtful emails: in which i worked hard to explain how undermining and insulting it is to endure instructions on what i ought and ought not say; in which i called on the wisdom of the buddha in an attempt to illuminate my path and enliven my skills at getting my point across; and in which finally i ended up on my knees, pleading; only after all of these efforts did i receive an acknowledgement that the person involved would try not to offer such instructions in future.

during the debate, when my advisor was still insisting that their position was correct, they explained that they wanted to let me know when i was making “wrong choices”, and also asserted that they were sure that i give advice too. i assured them that i really, really don’t. i think that advice is massively overrated. i only give it when i am invited to, and even then i tend to say things like “i suggest that…”, rather than proffer certainty.

i witnessed a beautiful example of emotional intelligence and communication skills a couple of years ago from an M.E. comrade. i had sent him a message outlining various recent challenges. in response, he asked whether i would be up for some advice on a specific physical problem. then he waited for me to reply. and only after i said yes please did he give his advice, which was expertly knowledgeable and practical. i tried the remedy he suggested, but unfortunately, as a consequence of decades of stage 4 endometriosis and over thirty years of M.E., my body is so dysregulated that it didn’t help me. nonetheless i was glad to have given it a bash. this piece of advice has stayed with me more than any other from recent times because of the gentle and respectful spirit in which it was given. in particular because i was offered a choice in the matter. with all the other advice, i recall primarily how physically uncomfortable i felt receiving it, as it were waiting for the onslaught to pass. when someone starts telling me what to do, i tighten up inside, it seems as if a sizeable piece of wooden furniture has taken the place of my guts and reproductive organs, and i brace myself against what i experience as an attack on my integrity. gosh it feels bad. bad and exhausting. even when i am the messenger, asked to pass an instruction on to another, i experience this bodily disturbance deep within my core. i am a mother tiger protecting her cub, whether that cub is my inner child, or my friend’s self esteem.

i know a handful of people whose default setting is one where they assume they are the only human who has been appraised of some extremely basic bits of information, the kinds of things we all need to know in order to get through a day without stuff going seriously wrong. and they have assigned to themself the role of explaining to the rest of us idiots these fundamental facts of life. i mean things in the area of: take your keys with you when you leave your home in order to be able to regain access on your return; purchase tickets to that film you want to see before they sell out rather than after; or prevent a small child from running into the road while cars are driving along that road at speed. i find these folk’s assumption that they are the only one who knows what they are doing truly baffling. i try to imagine the chaos they presumably envisage taking place whenever they are not present to tell everyone else how to act: cars crashing into each other left right and centre; children being mown down willy-nilly; everyone spending every night sitting shivering on the pavement outside their home, cursing their stupidity in having yet again left their keys indoors. not to mention all the items of knitwear shrunk from everybody repeatedly running their washing machine at an inappropriate temperature.

there are a number of contenders for my least favourite type of advice, but i think that the winner, above even the stating of the bleeding obvious, is when a person asks how you feel about a thing, and you reply by telling them how you feel about the thing, then they tell you not to feel the way you feel about the thing. they tell you to feel something else entirely. why did they ask if they didn’t want to know? and what has given them the impression that it is possible to choose how we feel? how can they have been around all this time, feeling all these emotions, and not noticed that their own emotions don’t have an off switch?

this evening i’ve been thinking about what the model citizen (my moral compass, or alongside the genius, one of my moral compasses), who is currently abroad, will say regarding all this when he reads or hears it. he will say that most advice comes from good intentions. the model citizen’s opinions on the behaviour of others is based quite heavily on his remarkable ability to project onto almost anybody else his own characteristics. so let’s say that i am prepared to acknowledge that his own advice, if he was prone to giving advice, which he isn’t – but for the sake of argument – his hypothetical advice comes from good intentions. i am not convinced that is true of everyone else’s. which isn’t the same as saying that theirs comes from bad intentions. but i think that many in our culture are so uncomfortable around other people’s distress that it is beyond them to put much thought into the advice they push at humans who report suffering. i think that because so many of us are so frightened by other people’s difficult stuff, advice is usually aimed at closing the conversation down as quickly as possible.

unfortunately i am cursed with a need to be honest. the federer fan calls me a truth-seeking missile, a quote he borrows from miranda richardson. this causes all kinds of difficulties for me. last year i had two catastrophic mental breakdowns, and i found it impossible not to tell people about them when they asked how i was doing. i didn’t go into detail, but i responded to enquiries after my wellbeing with words along the lines of “i am very unwell with depression”. this was a bad idea. few people were able to just hear me and believe me. nearly everyone found it necessary to try to offer solutions. but a central symptom of these crashing depressions was that they had no solution, not until the medication kicked in. that was kind of the point. my only option was to ride them out. this having to ride them out induced panic reactions in all but my closest circle of friends. i’m not saying we weren’t panicked too; we absolutely were. but we were down with the simply waiting it out plan, since it was clear that no other strategy was available. my partner and my closest friends were fucking amazing. thinking back on how they rode it out by my side brings tears of gratitude and humility to my eyes. how lucky i am to have such incredible people in my life.

just to be clear, lest i should risk hypocrisy, there are a couple of sorts of advice which i’m in favour of. i very much enjoy handy household hints. for example, i read an article about how you can clean silver using tin foil, bicarbonate of soda, and boiling water, and the results are so satisfying. i cleaned my charm bracelet using this method, and something magical occurs when you pour the boiling water into a bowl lined with foil, shiny side up, containing your jewellery and a big spoonful of bicarbonate of soda. for reasons i don’t understand (and actually don’t want to understand, since it would spoil the magic), a chemical reaction causes the tarnish from your silver to lift itself off then make contact with, and adhere to, the foil. i also appreciate grammatical proficiency, since the moment i begin to try to think about grammar the useful parts of my brain seize up and freeze over. i think i probably use something called an oxford comma from time to time, and if anyone challenged me on that i would need to search for specialist guidance in order to back up my flouting of traditional grammatical conventions.

my strongest reason for disliking advice is that i find it blocks authentic communication. i think that advice is almost always given for the benefit of the advisor, rather than the advisee. i think it is usually a lazy, fearful, knee-jerk response to the inevitable chaos of life, the gorgeous messiness. when someone honours you by trusting you enough to tell you that they are finding an aspect of their life difficult, why not simply be with them in their difficult state, respecting and giving it space, rather than try to shut it down and shut them up? most human problems don’t have straightforward solutions. with many human problems, the most liberating and comforting reaction is validation: it is a gift to receive the words “i believe that you are feeling the way you are telling me you feel. i hear you”.

st george’s day

sometimes i get muddled between dragons and dinosaurs
forgetting which is imaginary and which actually used to exist.

someone told me that the way i write, erratic and spiky,
rushing to arrive at the next letter,
indicates fast thinking:
but it strikes me as the opposite of quick-witted
that i need to take a moment to remember whether
a fire-breathing mythical beast once roamed the earth,
regardless of how improbable a triceratops might seem.

i complain that no one has explained to robert plant
that he is singing wrong by screeching in that pained and painful fashion.
a stranger concurs, remarking that proper blues singers don’t find it necessary to shout.

the white flag with the red cross heaves and sucks in the wind
on the pole above the town hall.

cacophony

don’t say this                                                                                                                                                                                             say that

 

but don’t say it now                                                                                                                                                                          say it later

 

                                                                                     and in a different voice

 

someone else’s voice. you have to guess whose voice to use, and what we mean by “later”.

 

i wouldn’t talk about that if i were you, or at the very least not to them.

i think you should wait a while before you risk bringing this matter up again.

 

sit in the corner. no not that corner! the other corner!

and speak loudly enough so we can’t hear (whisper whisper whisper whisper)

she’s so stupid she doesn’t even know which corner to sit in!

you must have known this about that. but not that about them.

and by the way you are the wrong size anyway. and shape. what a silly shape.

didn’t we tell you that you had to squeeze your squareness into that round hole?

i’m sure we warned you about the size and shape stuff right from the start,

when you were so little you hadn’t had the chance to put your great galumphing foot in it

then tread the mess all over our immaculate carpet.

we are the arbiters of reason, and we are legion.

george monbiot, a hero for people with M.E.

https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services

me and my M.E. comrades have been waiting decades for a top quality journalist to publish such a thoughtful, authoritative, impeccably researched, game-changing article about our condition. 

i am especially enjoying the beautiful paradox contained within this story: how perfect that it was a consequence of the unhinged actions – actions which result from mistaken beliefs regarding long covid – of one of the medical professionals who have worked so hard to keep this information concerning M.E. out of the public domain, which finally brought it into the light.

so thanks are due to psychiatrist professor michael sharpe for so generously sharing his magical thinking about long covid. and most of all thanks to you george monbiot. thank you so much.

nature notes for march

happily, we can now enjoy blackbird song again.

more problematically, groups of mostly, but not exclusively, white human males will return to their habit of congregating in pub gardens for the purpose of carrying out mirthless and exhausting studies into which among them can laugh loudest for longest. we all recognise their familiar call, more shout-shriek than laugh; mwah-mwah-mwah-mwah.

scientists haven’t yet fully understood the cause of this disturbing behaviour, and thus far no solution has been found. if any amateur naturalists out there have any suggestions, please leave a comment and include the hashtag #inheaven’snamepleasemakeitstop.

small pharma

“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.

this one’s pessimistic

“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?