i have had a piece published by sussex university. check it out... Life Writing Projects
i respect those who believe in a life after this one. but i don’t understand them. it seems to me that religion is no more than an excuse for not accepting the conditions of life. the here and now, nothing more than that. that is also the unique aspect of our life, the wonderful part of being alive.
i quote others only in order the better to express myself
it was an afternoon around the end of the summer last year. a couple of weeks previously, i’d finally bought a copy of the book a dear friend of mine, the wise owl, had published in 2012. my ME makes reading for any length of time impossible, but i’d dipped into the book and relished small portions of it. we hadn’t seen one another for a few years, and her book brought my friend back to life in my nowadays on the wrong planet. it felt like we were getting reacquainted. thus at that time the wise owl had been on my mind and in my awareness more than she’d been for ages. that afternoon i spent some time looking her up online. i discovered how active and well known she is on social media sites. then i put on some lipstick and went across the road to the local café, as i do on many afternoons.
it was a rather dreary bank holiday monday, and there were too many people i didn’t know sitting outside the café – which i think of as my café – for my liking. so i was in a distracted state when suddenly – hey presto! the wise owl appeared. for about seven years we’d not seen each other, had very little contact, yet just minutes after i’d been researching her online, and only days since i’d started to familiarise myself with her book, there she was. standing right in front of me. i’d magicked her up.
i could tell it felt odd to her that i didn’t register any surprise. my friend was pointing her face out to me for dramatic effect, gesturing – surprise! here i am! surprise! – but from my matter of fact response you’d imagine i’d seen her last week, or had been forewarned of her arrival. the reason for my surprising absence of surprise was that seeing her in the flesh seemed such a natural extension of all the other contact i’d had with her recently. it made sense. i hadn’t realised it, but i’d been expecting her.
people who don’t share the sense of serendipity or precognition which i and many others experience could find plenty of ways to shoot down what i’m trying to describe here. but…
and i am ever so wary about broaching this subject matter for a number of compelling reasons. but…
for one thing i am frightened, properly frightened, of being lumped in with new age thinking in any way, so frightened that i’ve not even attempted to post anything on these subjects before, despite how close they are to my heart. but…
if your life has been destroyed by a terrible physical disease which about half the world chooses to believe is a state of mind – a mistaken belief – you’re likely to get pretty pissed off with new age bollocks as the years go by, and the seventy-seventh person asks how come you haven’t been healed yet, or why are you so resistant to meeting the right healer in a place like brighton which is bursting at the seams with healers, or haven’t you heard of the lightning process, or…… but…
shouldn’t it be ok to talk about something which overlaps a little bit with magic if you are looking at it from one particular angle, and a little bit with spirituality if you peek at it briefly with your hands mostly covering your eyes from another, without being misunderstood and accused of, horror of horrors, being a little bit new age? but…
but this kind of experience, this stuff in the realm of prescience, is wobbly around the edges, uncertain, and hard if not impossible to pin down. and that makes it nervous subject matter.
since i first began this blog, i’ve been wanting to try to write something about belief. there are always a number of subjects percolating in my system, or in view somewhere on my conceptual horizon. i’m now recognising that belief is such a vast and weighty matter that it is overly ambitious to attempt to put everything i want to say about it in one post. so i’ve decided to simply start out, with no specific goal or endpoint in mind.
up till now i’ve based my beliefs about life, insofar as i have any, on my direct experience. one of the very few concrete conclusions this has resulted in is that i’m convinced that feeling my way through life works far better than trying to think my way through it. i find i’m much more likely to have faith in my decisions when i take this approach.
this is why i’ve decided to cast aside my natural tendency to cynicism and put my trust in something mysterious and possibly significant which has been happening to me for a long time. for most of my life, in fact. i’ve gone through phases where i pay it lots of heed, and others when i’ve pretty much ignored it. (it is frustrating how stupid our minds can be; how many times they can need to experience something before they pay proper attention to, and learn from, that experience. so although i like to think i know that life goes better for me when i am tuned in to my gut sense, or intuition, the fact is that when fresh trouble strikes, i tend to forget this vital resource.)
for a while now i’ve been trying to come up with a satisfactory term for this strange thing that happens to me. i’ve danced around different ways to describe this stuff to do with precognition for so long that i’m dizzy. i’ve gotten so bogged down in self-consciousness, so preoccupied with endeavouring not to put a word wrong, that until now i’ve ended up silencing myself.
for example; if i call it psychic experience i risk sounding like i imagine i could tour village halls helping people reconnect with dead loved ones. and when i bring magic into the conversation, i risk sounding fanciful. all i can think is that i must be inadvertently tuning in to a genuine thing – a real level of communication we humans truly have in our repertoire, but greatly underuse. one thing i am certain of is that being in touch with one’s gut sense nurtures foreknowledge. it is at those times when i’m best tuned in to my inner flow that i’m most likely to connect with prescience.
i feel like i’m seeking out a fragile middle ground where reason and mystery intersect.
though my problems are meaningless, that don’t make them go away
i take quite a lot of things too seriously. when i am at a particularly low ebb, i take some things which really aren’t worth bothering about far too seriously. i think many of us familiar with deep unhappiness and/or depression have a tendency to take things that aren’t personal personally, and have leanings towards comparing our own circumstances with those of others, unfailingly to our own detriment. unfortunately, recognising these unhelpful tendencies doesn’t make them go away.
one of the pointless things i get properly wound up about is how radio presenters talk to me. of course i realise they aren’t actually addressing themselves to me, but i spend so much time listening to radio that it sometimes feels like they are. and anyway, that is plainly part of the point of radio, to make it seem direct and personal. which makes me wonder who presenters do have in their mind’s ear, when they are chatting into their microphone. do they envisage someone they know well, or a neutral version of a friendly face?
the broadcasting tendency i object to most strongly, and which i regard as yet another sign of everything in our culture going down the pan, is relentless, meaningless cheer. i do not want to be advised on a daily basis to have a fantastic rest of the day. in fact, the more i think about this preposterous optimism, the more i consider that almost nobody could take it with a straight face; even the most healthy, cosseted, blessed members of the human race surely can’t achieve a fantastic rest of their day every day? surely what marks out a fantastic rest of your day is how different it is to all your other mornings, afternoons, or evenings? and if such salutations aren’t intended to be taken seriously, then i’d rather they didn’t say them. i was ridiculously grateful recently when a presenter suggested i have a passable thursday. this was a piece of unasked for advice i could really get on board with.
when john peel died i cried for hours. i lost a friend – loads of us did. one of the many things that marked him out as a different breed of broadcaster was that he read out song requests from people in prison. what a great idea. it must be the case that many of those who listen to radio lots of the time are not healthy, cosseted or blessed. the healthy and blessed people are out there having fulfilling careers, raising children, travelling to exciting locations and eating in expensive restaurants. they aren’t lying in bed at four in the afternoon so unwell that all they can do is listen to the radio. or stuck in a prison cell. or too poor to afford a television licence, and therefore wholly dependent on their radio.
i also mind very much the conspiracy of silence which dictates that presenters never, or almost never, mention the fact that not everyone listening is tickety-boo, that not all of their audiences’ lives are going swimmingly. i think what i find most uncomfortable about this don’t-mention-the-germans type approach is its tacit suggestion that topics like bad luck, poverty, ill health or disability aren’t brought up because they amount to bad taste. and when illness and disability are mentioned, it is almost always in a heroic context – to do with triumphing over adversity, or loss courageously borne. people who get sick and stay sick for decades – our stories don’t get told.
when it comes to my favourite radio station, radio 6, not addressing the reality of suffering is such deeply entrenched behaviour that it appears to be company policy. the most glaring example of this is how people who die – and, annoyingly, songwriters and musicians seem just as prone to dying as the rest of humanity – never “die”. they pass away. actually, not even that; they sadly pass away. i find this a very odd turn of phrase – i’m not sure of the grammar, being a lousy grammarian – but to me it sounds like the sadness is being attributed primarily to the dead person, rather than anyone still alive. the ultimate passing of the buck!
i get the point of not wallowing in misery (though my troll might say otherwise). i get the point of tackling complicated subjects with care and sensitivity. but it isn’t sensitive or caring to simply ignore difficult stuff. and speaking from my own experience, when my difficulties are silenced, they shout so much more loudly. they bash on walls and doors and cry out for acknowledgement. which makes it hard work to hear anything else. i assume there are radio listeners whose life circumstances are profoundly challenging who really do prefer broadcasters to present an idealised, sanitised world. but there are already plenty of stations catering for them; i want my favourite station, which identifies as “alternative” and “eclectic”, which is seen as john peel’s direct legacy, and which, reading between the lines, aspires to a heartfelt kind of right-on-ness, to expect more from itself, and to reach out to me and my kind. please, radio 6 – return the favour – listen to us.
limb by limb and tooth by tooth
tearing up inside of me
we are currently witnessing a heatwave here in the uk. these extreme conditions are bringing back all sorts of scrambled reminiscences from former very hot weather episodes. memories of sliding over and over again off the same flat rock on a beach in cornwall into the clear cool sea. (this was in the summer of 1976 when it stayed hot for what felt like forever, and at one point the ground of our local churchyard was covered with hundreds of thousands of ladybirds). earlier recollections of groups of neighbourhood children running in circles around our garden for hours, while my father sprayed us with the hose until our ears were half-deaf filled with water and the grass sucked and squelched under our feet.
how i ache to slip from a perfectly smooth rock into bracingly chilly water now. or to race across sand baked so hot it scorches the soles of my feet, keep on running until the sea slows my limbs, keep going on till a wave breaks over my head. for my skin to taste of salt on account of spending hours cavorting in the sea, rather than because i have been struck motionless as a statue and dripping with fevery illness sweat for centuries.
my ME has been worse for a few years now. i’m not sure how many exactly; i try not to count. i have a tendency to describe worse patches as “phases” or “patches” even when they go on for extended lengths of time, since these words make them sound transitory. this is to do with the continuing balancing act which i’ve attempted to illuminate in previous posts – my ongoing determination to not get so deeply swallowed up by all my symptoms and disabilities that i risk forgetting who i am apart from, or alongside, them.
it is bewildering to realise that when i talk about stuff i used to love doing before i stopped being capable, i am talking about half my life ago. (at least, half of my life in linear measured time. given that my experience of perceived time is that it speeds up and up at a pace which has become comically alarming, not half in felt time. though i’m not sure this helps).
there is a peter sellers long playing record my parents probably still own. me and my siblings thought we’d entered a parallel universe when we discovered it as young children, we were so thrilled by its irreverent anarchic humour. on it there is a sketch involving a character called auntie rotter who broadcasts a childrens’ hour type radio show. at one point she encourages her young audience to hide behind a door with an axe and chop their father in half when he gets home from work, so that they’ll gain the advantage of having two daddies!
i’d like to be able to chop myself in half. to cleave the fully operational parts of me from the diseased malfunctioning elements. i’d like to slice bone from ligament and tendon from muscle with a fine scalpel. most of all i’d like to cut out the bits of my brain which cause so much confusion. which jumble and disperse the letters when i try to read for more than a couple of pages. which make it impossible for me to write for hours on a regular basis. which create such profound exhaustion that i have to stay in bed for much more of my time than i am up and about. i’d like to excise the bad. deep clean on a cellular level.
it is maddening to have to scratch and scrape around at the bottom of a well to garner even a tiny quantity of lucid thought. waiting for my brain to start working reliably is a wait too far with no likely end in sight. so i sit down in front of the screen to try to type with a mind halfway somewhere else, and limited oxygen supply. and i think – what do i need to do in order to write something i consider worth writing? first i need to get my head straight. but i can’t begin to guess what that might look like.
when non ME friends have asked what brain fog feels like, i usually describe a large rickety house with lots of rooms and long narrow hallways. to reach any of the rooms it is necessary to navigate at least one of these extensive hallways. all the rooms are lit, but most of the time most of the rest of the house is in shadow, and you can hardly see where you are going. each room contains a precise train of thought or some clarity of vision. when you arrive in one of these rooms and spend time in it, you know what you’re doing and why you are there. but all your other clear ideas reside in other rooms whose doors are closed – you have no idea how far away they are, or how long it might take to get to any of them. and once you leave one room you immediately depart that comfortable space where your mind makes sense. you lose touch with all that certainty and are plunged back into befuddlement. you feel dim most of the time. so while it might seem to your friend as if your head is straight and your thinking makes sense, it isn’t and doesn’t. for twenty-six years nothing has joined up in the way it used to before i was ill.
i can’t go on. i’ll go on.
after i’d spent some time sinking down deep, right down to the bottom of the ocean, several years ago, i made a decision. i resolved to try to swim, or at least remain buoyant, for the time being.
back then i didn’t feel sufficiently courageous or integrated to dare to consider what “the time being” might entail. simple activities such as carrying on breathing and eating were so challenging that extraneous concerns were beyond me.
mostly that keeping on keeping on decision was based on caring about how people who cared about me felt, and not my own behalf. the whole period is hazy in my memory, like an out of focus silent black and white film viewed from a great distance. my only clear recollections involve small windows of bright light, colour, and clarity breaking through the cloud cover. i remember the ferocious protective love i experienced for the children who were dear to me. and i remember brief flashes of being intrigued by the world beyond my own existence; mini-breaks from self-obsessive nihilism.
specifically, i remember watching a documentary. today i have absolutely no idea what it was about. but i recall that at the time i was suddenly overtaken with curiosity regarding its subject matter. and that when i registered that i was engrossed in contemplating something outside my own miniscule universe, i thought there might be hope of better times ahead. from that point on i determined to act as if my being here mattered, despite my persisting conviction that it didn’t.
to my surprise those windows of clear colour and light gradually widened, and i slowly became more emotionally connected to the outside world. which is why, when i have episodes of sinking low nowadays, i favour the maxim “fake it till you make it”. (by fake it till you make it, i mean continue practising simple actions to do with keeping body together – things such as washing, tidying, and eating nutritious food – continue to do those things despite the fact that your whole being rebels against them. when consumed with lowness these actions don’t only feel counter-intuitive; they feel like a body blow insult to our overwhelmingly destructive drives). if anyone had advised me to fake it till i made it when i was younger, i would have balked at the notion and felt misunderstood. but time has told me that it works.
the public disbelief and lack of understanding of my illness continue to be capable of knocking me off my feet. and when i’ve reason to suspect that someone who truly matters to me might think ME is not a real physical disease, i am still crushed. these are times when i need to re watch the film “unrest”, or to connect with jennifer brea and her supporters on social media.
scent can transport us to another time of our life in a split second. more than a decade and a half later, i am still intermittently haunted by the bitter, chalky reek on my skin and in my nostrils of an overdose after coming off a twenty-four hour antidotal drip at the hospital in brighton. and, as an unexpected side effect of stopping smoking, my already extra strong sense of smell became temporarily overwhelming. everything stank, even supposedly pleasant aromas. i was brushing my teeth when that re-stench of overdose hit me full frontally, and for a moment i was back in the royal sussex hospital, debating my possible demise with a doctor and nurse.
these days i’m mostly managing to keep my head above water. i’m not exactly swimming – that would require energy i don’t have access to right now – but at least i am not drowning. hey, you on the shoreline: do you see me waving?
whenever i feel blue, i start breathing again.
l frank baum
i have recently acquired a wonderful new piece of kit which is making a great positive difference to minor but nonetheless significantly uncomfortable and preoccupying symptoms.
for several years i’ve experienced a condition with an amusing name – it is called euston tube station malfunction, or eustachian tube dysfunction, or something along those lines (geddit?). it means that the passages connecting my nose and ears get bunged up, and that air bubbles press against my eardrums, causing moderate hearing loss. in more recent years i’ve also had adjacent overall mucousy congestion, sinus headaches, clogged nostrils and so on – suffice to say, i’ve been blockaded on all sides.
a couple of weeks ago, when perusing the internet in search of home remedies for these ailments, i discovered an odd little pottery item which resembles a miniature gravy boat with an elongated spout. you put warm salienated water into it, press the opening of the spout against one nostril, and tip your head into a horizontal position. rather miraculously, the salt water you pour up one nostril drips more or less simultaneously out of your other nostril. magic! even more magically, i am now a lot less phlegm bound and blocked up than i’ve been in years.
it goes without saying that there are many far more disabling symptoms which i’d much prefer to conquer than those aforementioned cold-like ones. however, one of the lessons that long-term illness has taught me is to celebrate small mercies. to be grateful for each battle won, no matter how tiny.
we are so endlessly goal oriented that we forget to bask in a temporary sense of achievement when we get to cross one small accomplishment off our to-do list. rather than wallow for a while in well-done-ness, we rush with impatience headlong straight onto the next as yet undone task.
so i’m taking a bit of time to celebrate my chance discovery of such a beneficial tool. i am counting my blessings.
we are just an advanced breed of monkeys on a minor planet of a very average star. but we can understand the universe. that makes us something very special.
one can see clearly only with the heart. what is essential is invisible to the eye.
antoine de saint exupery
in recent years i’ve watched a lot of television drama series. including lots of foreign language dramas. often that is all i have the energy to do. when i’m immersed in a story told in spanish, or danish, or whatever, i can almost convince myself i’ve learnt that language by association, and become fluent in it. in the past couple of years i have had a handful of thrilling but brief moments of believing i’m multilingual. i don’t get to do anything or go anywhere in real life, i think, but i have magical powers of communication.
i haven’t written for ages. which is definitely too long not writing. and i now find i’m in danger of becoming invisible to myself. i have forgotten where i start and end, and how my end and beginning coincide with where the rest of the universe begins and (apparently) doesn’t end.
i am sitting next to a pool surrounded by grasses and wild flowers in a moonlit woodland. the moon is full, there are no artificial lights for miles and miles, shards of light are shining through between trees, and these shards illuminate the colours of some of the flowers. little purple ones with yellow centres and pale furry leaves, and larger orange flowers whose petals are weighed down by tiny droplets of dew. i have been alone by the edge of that pool for so long that i’ve lost touch with what time of night it is, or even what season i’m in.
i throw little pebbles into the centre of the water and watch circles eddy out from where they hit the surface with a soft plop and go under. i’m searching for something in those tiny concentric waves, seeking messages. i’d like the world to stop turning. if the world would just stop turning for a while, and the moon’s reflection in the water remain still and steady for long enough, i might be able to understand.
i need to make sense of something. but first i need to work out what that something is.
i think i need to learn a new language.
there’s a woman in a television drama. she works for the secret services. she is being held in an interview room at a police station somewhere in a major city. she needs to get a message to someone to get her out of that place. this isn’t only a matter of life and death for her – it is that, of her own life and death – but also concerns the imminent end of the world. imagine being one of only a handful of people around your planet who knows your world is going to end soon. the woman is aware that she is being filmed and observed on a screen by a man somewhere else in the police station. so while she is being interviewed and answering questions, she is also surreptitiously tapping her fingers on the desk, beating out a silent pattern of communication. she is using morse code to tell the man watching her on the screen in another room something which will convince him to come to her rescue and help get her out of the station.
the woodland i’m in might be a place on the wrong planet which i haven’t visited before. perhaps the wrong planet is similar to the one in the illustrations of the story of the little prince. maybe it is so small i could walk from one side of it to the other independently, without needing anyone to push me in my wheelchair.
in a different television drama, a woman, a talented musician, is staying in a huge room with an antique bed in a big house in a rural location outside a village. she is trying to make sense of who she is. the person she had always believed was her birth mother has recently died, and left a shoe box containing newspaper cuttings and photographs. these images and papers concern a child who went missing from that village more than twenty years ago. the musician is convinced that her mother left this information intentionally; that she wanted her daughter to visit the village and to find out what happened there all that time ago. and to discover how what happened pertains to the musician’s own life. the musician becomes aware that a strange man is following and watching her.
in one scene the musician sees this man standing in the shadows of some trees in a field next to the grounds of the big house. she calls out to him and heads towards him, on foot and at speed, which confuses me. surely she must know she can’t walk that far, i think, let alone run. she will have to wait for a friend to bring her wheelchair, or to chase him on her behalf.
so many stories. so many places and planets. so many beds in stranger’s homes which i might have slept in. i might have slept in some of them for so long that i have dematerialised and melded into the fabric of the building. so many languages and ways of saying and not saying things, and all those codes. some days it feels like you are part of a bigger picture, that how you see things and say things could count for something.
some days i’m not sure i haven’t been in a bed somewhere else forever, disappearing, becoming invisible. losing the power of speech.
pondering edges. lying awake as a child trying to envisage the universe going on forever. you keep flying on through its star filled blackness, yet its end points persist in appearing. you push forward, straining to drive those edges further and further away. but no matter how hard you work at this, even when you succeed in keeping frontiers at bay, you know they are still there, just out of sight.
those frontiers insist on existing.
there is a crack in everything
that’s how the light gets in
when i discovered psychotherapy, it was like walking into a parallel universe i’d been meant to inhabit all along. in that universe humans spoke this marvellous language i had always known on some level, had always needed and wanted to speak, but couldn’t access before. life made sense. i’d come home.
most of the essential lessons came slowly and stutteringly. but the vocabulary itself was an immediate revelation. finding out that we don’t get to choose what we think or how we feel lifted a great weight from my shoulders. it meant our emotions and thoughts aren’t inherently good or bad, and began a lifelong process of dismantling the moral maze i’d got lost in.
being home isn’t a constant state. we can lose touch with it when the going gets tough and the ground beneath our feet becomes unstable. when we lose our balance we can forget how to find our way back there, sometimes for so long that returning feels impossible. when we are away from home for ages, and despair of ever regaining our bearings, that’s when the pull of our crazy culture can be so strong, so overwhelming. it tells us its reality is the reality; its values are the only ones worth having.
it takes discipline to hold onto our moorings.
i think this is the reason i am still regularly amazed and filled with gratitude when something external echoes my inner world. when i read something another has written, or look at a painting, or listen to music, and my insides say “oh yes, i recognise this. i have been here”.
but i am trying to work out why i also experience a very different reaction to this echoing effect. why alongside gratitude there is also disbelief and unbalance, almost as if i must have imagined that book or image or song; as if the source of this deeply felt resonance cannot be real. i think this connects to having spent the first part of my life not accessing that language which makes sense of my existence. that not-belonging-ness is always with me to varying degrees, and when i feel its presence particularly strongly – when i lose my bearings entirely – it doesn’t seem plausible to have my inner world mirrored back at me from the outside.
it seems the human condition is a continuing balancing act. a tightrope with our individual experience on one side, and the world we share with everyone else on the other. holding on to our own private reality, our personal terms of reference, inspirations and dilemmas, and keeping these in some sort of workable proportion to our shared experience, is an ongoing practice.
i saw the documentary unrest last week, and i want to thank jennifer brea for making this film. it has changed my life. i changed during the process of watching the film, and have continued to change subsequently.
since seeing it, i have been reflecting on the immense courage and strength of character required by anyone who has to take a stand against the world on behalf of any publicly mistrusted experience which they know to be true. even when the world yells back at them that they are mistaken. i don’t mean something they think or believe, but something they absolutely know to be true. something like knowing you are gay in a homophobic culture, or knowing you are meant to be a man when you were born in the body of a woman.
or something like having a devastating physical illness which, because the medical profession hasn’t yet understood its mechanisms, many people continue to claim is psychiatric in origin. i have nothing against psychiatric illnesses. i have been mentally ill in the past. i don’t consider mental illness to be any more or less serious or impactful than physiological conditions. when i am mentally ill, and know that that is my problem, i am honest and open about it.
but when i’ve experienced a catastrophic physical illness for more than half of my life, i am also prepared to call that by its name. at least, i am now. until last week i had chosen not to declare my disorders in this blog. while watching the film last tuesday, i realised i was ready to come out. for the first time since i was twenty six years old, i don’t feel ashamed, embarrassed, or that i need to justify myself. i don’t feel obliged to apologise for my crazy symptoms. i have ME, and i have been severely ill for all these years.
stupid people have made stupid jokes about my being in a wheelchair, but being able to get out of it to walk a short distance. people who i’d thought were understanding, and to whom i’d explained my symptoms in detail, have asked ignorant and preposterous questions. such as if i didn’t think my illness was psychological, might it be at least sixty percent psychological?! i have been judged over and over, and have repeatedly borne the brunt of what i now realise is disability abuse. i have faced so much disbelief and disrespect over so many years, that frequently i’ve lost the ability to trust myself.
jennifer brea has made a beautiful documentary. it is partly an intimate portrayal of one couple’s suffering, and partly a depiction of collective endurance. it is also, just as importantly, a call to arms. (it wasn’t until after i saw the film that my spanish friend alerted me to the fact that its title has a campaining, as much as an illness related, meaning.)
when a dramatic thing happens to us as an individual, often we aren’t able to perceive its universal relevance. i don’t know how she managed it, but jennifer brea has somehow magically succeeded in sensitively reporting her own drama, while simultaneously describing one which is global in scope and significance.
the documentary explains how people with MS, a condition which has many similarities to ME, were not believed until cat scans were invented. once scientists were able to visually witness the physical evidence of their disease, the public stopped judging them as suffering from a psychosomatic sickness.
there are many shocking tales in the film. there is whitney, an american photographer who used to travel the world, took stunning photographs, and was a source of joy and zest for life to all who met him. whitney now lies in a dark room in his parents’ home. he wears ear defenders, finds even the most basic human interaction agonisingly painful, is emaciated and depends on a drip for nutrition. he can’t eat or speak or listen to music. whitney’s parents are well known academics. his father, a famous biochemist, has set up a research team at stanford of some of the most admired international scientists, two of them nobel prize winners. he is desperately trying to find out what is going on in ME patients, desperately applying for funding. so far his applications have been rejected twice. he fears his son could die from organ failure before he reaches his goal. (i was astonished to discover that there is a three percent mortality rate in ME patients).
another shocking report concerns a family in denmark whose daughter is also a severely ill ME person. one day four policemen turned up at their home and took their daughter, karina, to a psychiatric institution. the institution’s reasoning, they claim, is that karina suffers some kind of fantasy illness which her parents are exacerbating by buying into – by believing her. after three years karina was allowed home, still as unwell as she was on the day when they took her away.
there are also stories of hope. ron davis, the chap at stanford, and nancy klimas, an immunologist based in miami, are doing amazing research and uncovering new information about this disease. they are also speaking to the world on behalf of patients, working to dispel all the myths, judgements and misunderstandings. and we hear about an international protest which took place in 2016 called missing millions. many attended demonstrations at twenty five cities around the world, while the symbolic presence of each of the ME people too sick to attend in person was represented by an empty pair of shoes.
before i saw this documentary i thought i knew quite a lot about my illness. i was wrong. before i saw it i didn’t know what to expect. i suspected i might find it moving. i did find it hugely moving, but also informative beyond my imaginings. when it comes out on dvd i intend to buy two copies – i will need to rewatch it multiple times to take in all the new information – and i want to lend the other copy to as many friends and family as i can persuade to see it. as i said to the cinema worker when we left, i want everyone to watch this film. it has the potential to transform the world’s recognition and understanding of this terrible disease.
thank you jennifer brea.
we shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time
little gidding, ts eliot
a while ago my spanish friend told me about a film called the defiant ones starring tony curtis and sidney poitier. the film focuses on two prisoners who are able to escape when the vehicle they are being transported in is involved in a crash. these two men are shackled together and must learn to overcome their mutual hatred and work together in order to survive. one of the characters (played by poitier) is intelligent and resourceful, while his companion seems, at first at least, to be foolish and clumsy, a hindrance to the two escapees’ progress.
my friend pointed out that this is a rather neat metaphor for my situation; i am divided in two, but the two are both stuck with each other. one of my selves is the ill disabled one, all the cannots and does nots; and and the other is my spirit, the non physical manifestation, who strives to be as alive as possible despite all her restrictions and limitations. i live dual lives in the same body, walk (so to speak) along two separate paths.
one of the most baffling peculiarities of the human condition is the whole mind-body conundrum, the confusion of existing in both material and metaphysical aspects. being alienated from, or at war with, one’s body adds another layer of discombobulation and identity crisis. many of us who are middle aged or beyond have discovered the daft indignation of never looking how we think we should in the mirror. i don’t just feel like there is a slimmer version hidden inside and screaming to escape from my unable to exercise, overweight self; much of the time i simply don’t relate to or recognise my physical being at at all.
i recall that i used to have an overview of sorts, a sense of the trajectory of my illnesses and how they have behaved over time. the better and worse episodes, the downs and ups. but in recent years my perspective has clouded over, and i can no longer trace any clear chronological narrative of my ill existence up to this point.
too much time spent in the shadowy place of nightmares and fever, chasing after meaning in the dark. too many hours and days out of touch with the living breathing world. having over and over to recalibrate and relearn a crazy sort of balancing act. i don’t get to go elsewhere to search for peace of mind. i have to try to locate it here, somewhere on this little patch of land i call the wrong planet.