walk, don’t walk

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.

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