a review of the film ‘unrest’

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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.

two peas in a pod


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.



a room of one’s own


life is full of misery, loneliness and suffering – and it’s all over much too soon

woody allen

if our linear perception of time is, or could be, an illusion, why does it seem to matter so much how quickly time appears to pass? and why do some of us feel we have a personal responsibility to gain mastery over it by slowing it down?

and why do so many other unavoidable aspects of life feel like moral issues? do we navigate our way through our existence, or is life something that happens to us; is done to us, rather than by us?

i wish to find a more comfortable place to inhabit. a place where what i know intellectually and what i feel emotionally are better at being friends with one another. a space which is less either or and more both at the same time, and in some kind of harmony. a room for manoeuvre.

clouds ahead


we’re only particles of change i know, i know
orbiting around the sun

hejira, joni mitchell

it is happening again. another case of writer’s block here on the wrong planet. another power cut.

it’s not what you say, but the way that you say it.

having ideas is not the issue. finding a fluid way to navigate the maze of questions, notions and responses, that is what matters. not writing makes me sick in spirit. being someone who struggles to maintain radio contact with her internal resources, the sort of thinking-writing i do here has become crucially sustaining. a creative source and outlet. a pathway i need to visit regularly in order to connect with a little bit of mystery.

whether the words flow at a similar pace to my thoughts, each guiding the other across the page, has nothing to do with intention. it is pot luck when i hit on those two essential ingredients of well-enough-ness and the right-head-space simultaneously.

i’ve been thinking about three buddhist monks i saw in the cafe here on the wrong planet a few weeks ago. i have the idea that if i’d spoken with them i might have caught some good medicine. i was going to say an antiviral, but i mean something bigger than that. something like those defragging programmes that clean all the muck and detritus from your computer, leaving it to run faster and more smoothly. like that delightful sensation of a settling deep in your guts, when confusion lifts for a while and acceptance sets in.

a long long time ago i used to access that space quite spontaneously when in countryside or by the sea. sitting on rocks on a beach in cornwall watching the tide turn. swimming solo in a secret cove. cycling narrow lanes in devon. atop a mountain in wales. walking on the downs near here. these were times and places where peace of mind arrived inside me, unbidden.

places where time ceases to pass for a while, and times when your heart expands and is in the sky and the sea and beyond the horizon.

your foolish mind stops whirring, your ego takes off for a short time, the hot sand beneath your feet warms right up through your body and explodes out of the top of your head, and you are just a miniscule speck of that sand. as if all of your insides suddenly reconfigured into a perfect balance. like the sun setting in your belly. everything is part of everything, and all of that everything is ok. the space you endlessly desire to inhabit, but never find through effort. it is only once you arrive there that you can be sure it exists. and only then do you realise you couldn’t find it till you gave up trying.

the right head space for writing is a somewhat diluted version of this meditative state. i never find it by searching. when i’ve stuff i want to say, i enter a mental fog by default. whatever it is i want to discuss, i wish to do that so very much that i immediately draw a blank. i feel driven and adopt a panicky, pinning things down approach which is constricting and entirely unhelpful. playfulness and expansion are the key, and when they come they come through letting go.


spring forward, fall back


not until we are lost do we begin to understand ourselves


according to my friend the federer fan, i have been trolled. allegedly. i am sitting firmly on the fence in regards to this matter, since i am not at all convinced i understand exactly what trolling is. i think perhaps it has more to do with intention than consequence. like i said, i’m not sure.

i have asked people to make comments on my blog. hits are great. hits mean that someone unknown has taken the trouble to look at it. but comments give it a real relationship to the outside world. it would be vain and dishonest to only approve positive comments. in any case, it is salutary to be reminded just how easy it is to jump to judgement. and to consider the leap of faith required for everyone who puts what they do creatively out into the world.

when i get my knickers in a twist about writing or drawing, i find it therapeutic to bear in mind a few things some supremely, inarguably talented people have said: john lennon said he couldn’t listen to any of the beatles’ recordings without noticing what he’d change about them; leonard cohen talked about how he felt he was scraping the bottom of the barrel. he contrasted his experience of writing to that of other creative people, who appeared to have an abundance of material and inspiration at their fingertips. what he put down on paper was the only thing available to him at that time; and this quote which i’ve heard a lot lately, from various sources, that “inspiration can strike, but it has to find us working” – and now find is attributed to picasso. it is humbling as well as reassuring to remind myself that even some of the most gifted creators of recent time experienced self doubt.

before i started this blog i had no idea what it might be. some friends i’ve spoken to about writing or painting or drawing tell me that they set off with a clear intention, and that the end result turns out as they expected it to. my experience is very different. sometimes when i embark on a picture or piece of writing i have a specific theme in mind. occasionally i know roughly what its conclusion will be, but not how i’ll get there. but mostly the process is a complete mystery, more like launching myself off a cliff blindfold with no idea where i’ll land.

i envy that aforementioned certainty and confidence, and part of me would like to have more idea of what i’m doing, more of the time. but there is something wonderful about the process of mystery. at least, there is when its outcome turns out to be ok. it is exhilarating to not discover the punchline until the end of the joke.

second guessing, imagining potential negative reactions, is fatal. if i heeded all the clamouring critical voices sitting just out of sight behind me, i would edit and edit myself into silence.

i guess all this is by way of saying that the stuff i post here is the only stuff i can post here. that there isn’t an alternative blog on another planet with more temperate conditions where i put different words in a different order, and mean something else.


cartesian duelling

The Great Day of His Wrath 1851-3 by John Martin 1789-1854

where do we come from? what are we? where are we going?

paul gauguin

when you’ve lived with chronic illness for many years, the worst sorts of bad patches are the inexplicable ones.

like when folk around you have proper colds, with blocked noses and sneezing and throaty voices. and you kind of feel like you probably have the same virus, in that you are twice as weak as usual, and spend even more ridiculous lengths of days in bed. but what you don’t have are any tangible symptoms. so you go around in circles searching for some sort of evidence, proof – and most of all craving a guarantee that this won’t go on forever – oh, for the simple relief of a clearly defined, briefly endured malady with a beginning, middle, and end!

last year was my illest year in a long time, and there were periods i only just about scraped through, thanks to the support of the thin man and a small number of other special people. when your body is no kind of ally or home to your spirit, it becomes crucial to seek sanctuary elsewhere. my most treasured place of comfort is the company of close friends. for a while i can lose myself in conversation and reflection there – at those times i am as alive and connected as everyone else – i am simply another human being, questing for meaning and understanding, warmed through by common ground.

very young people offer a particularly pure form of respite from existential suffering. they inhabit each moment entirely, draining every last drop of fun and joy from the most basic activities. if only we older humans knew how to return to that perfect unselfconscious state – if only we could reside there!

whatever one’s circumstances, balance and flow are essential ingredients for peace of mind. the more challenging our individual situation, the more work needs to go into maintaining this balance and flow. at least, that is how it is for me.

a few days ago, the slightly better energy i’d enjoyed for a few weeks deserted me, and right now i am floundering. in the dark. at the edge of reason. my sense of self is being diluted, and full scale erosion threatens. i feel like i am attempting to ward off a major flood with the pathetic resources of my ten numb, swollen, sweaty fingers and thumbs, trying to force water back up a hill.

how not to catastrophise? how to keep faith that the already severely limited abilities i possess won’t disintegrate further? everything is falling away from me, and simultaneously crashing in over my head. slipping and sliding, stepping stones moving out of place. this is a crisis of spirit, a personal emergency. when i am this lost and afraid, this short on belief in my emotional strength, the only thing i know how to do is put pen to paper, and pray for the words to carry me through the stormy waters and back to dry land.

and maybe this evening all i can say is; i am writing, therefore i am.

stranger things


there is nothing either good or bad, but thinking makes it so

hamlet, william shakespeare

recently i have been doing a lot of thinking about thinking. i guess this is a more profitable pastime than worrying about worrying, an activity i used to specialise in (and still can, given the right circumstances).

this reflecting upon thinking led from my musings in the blurred lines post to do with putting ideas into words. when i try to observe my experience of thought, i notice that words don’t play a major part in the process. thoughts seem to come in a rush of jumbled impressions made up of visual imagery, memory, scent, sound, emotion, atmosphere, and other stuff i haven’t found the words to express.

it seems that if i come upon a thought which intrigues or troubles me, i get the urge to pin it down, and it is then that i attempt to translate it into language. which came as a big surprise. until lately, i’d pictured the process of thinking as something akin to writing letters to ourselves. but it seems to me now that endeavouring to explain that process has stronger parallels with trying to describe our dreams to one another. and it is almost impossible to avoid making dreams sound as if they make far more logical sense than they do.

some days i am overwhelmed by the miracle of language. at other times, i despair at the inadequacy of words to help us solve human problems.

it would be unjust to lay all the blame for this confusion on donald trump and nigel farage. however, i do believe that when politicians abandon responsibility for truthfulness, we experience a widescale communication breakdown. i’m not talking about truth in the sense of integrity in their private lives – i don’t care if politicians have adulterous affairs, or do drugs. but i do care when they intentionally mislead, or tell barefaced lies to, their electorates, and momentous decisions are made partly or wholly on the basis of that misinformation.

dogger fisher german bight


your madness fits in nicely with my own
your lunacy fits neatly with my own

robert wyatt

for some time now i have been studying the discipline of cryptic crosswords. i am fortunate to have an excellent mentor and tutor on the subject. said tutor, aka the thin man, is something of an autodidact; i realised this when i noticed how many unusual words he knows by their spelling and meaning, but cannot pronounce.

one of the most fun and satisfying aspects of cryptic crosswording is when you “invent” a new word, on the basis that it is the only possible solution to that particular clue, and only afterwards confirm it exists.

my new word is inflorescence. it means the process of flowering, or all the parts of a flower – its stem, petals, stamen, everything – or the arrangement of smaller flowers on their stalk. this surprised me, because although on paper it looks like a word to do with flowers, when i first said it out loud it sounded as if it meant glowing from within.

crosswording is a quiet, often solitary, pursuit. but when we do a crossword in a national newspaper, it is also a validating form of linking up and joining in. copies of the same newspaper have passed through so many strangers’ hands, so many others have filled in the exact spaces in an identical crossword; rather like hearing the shipping forecast, or looking up at the moon and remembering it is the same moon that everyone else in the world who is looking up at the moon sees, these kinds of simple activities remind us we are part of something, and therefore matter.

we have the stars


let there be light

the torah

considering the wrong planet’s modest proportions, it is wonderful how many beautiful and interesting views we see; sulphur yellow on pink sunsets in one direction, and the downs softening from green through ochre to gold in the other. the moon comes up over buildings opposite, while our ever so miniature garden turns to spiders’ webs and dying geraniums out back.

and what a spectacular early autumn we have had! the light, the cloudscapes, rain coming down in sudden hearty bursts from extra deep blue skies; some days we were even treated to a rainbow.

the weather seemed to be making a special effort to demonstrate all its most impressive seasonal variations in speedy succession.

when the sun was low in the sky, long shadows cast by folk walking home from school and work; when i emerged from the subdued shade of indoors, how its brightness would temporarily blind me, so that i’d have to pause before daring to attempt to cross the road.

blurred lines


when you stop thinking about yourself all the time, a certain sense of repose overtakes you

leonard cohen

you know how sometimes the saying aloud of a thing can make it feel more true and real? there are many notions i don’t bother voicing, not even in the privacy of my own head, purely because to do so seems like stating the bleeding obvious. other concepts i avoid putting into words because i don’t want to acknowledge that they exist.

in conversation with a friend recently, i said “all day, every day, year after year, i can’t do what i want, in the way i want to”. which, while a perfect example of stating the obvious, is also one of those thoughts i usually endeavour to sidestep; it is such a big deal that i don’t know how to take it on board. i have inhabited a state of compromise so profound, for so long, that much of the time i don’t even know it is there.

there is a fine line between acceptance and resignation, and this line can get quite blurry at times.

which brings me back to the problem of holding on to a sense of self.

especially in this self-seeking, lopsided, wrongheaded, “because you’re worth it” culture of ours.

where patience is not a virtue.

where there is so little emphasis on living the best way we can by opening our hearts and caring for our environment and one another, and so much on individual fulfillment.

where working at being our most present, honest, humble selves has been overtaken by aspiring to own the biggest house and the fastest car; by dumbing down, built-in obsolescence, and instant gratification.

where community has been largely replaced by this i’m all right jack, batten down the hatches, each for him or herself and their own nuclear family, and sod the rest, attitude.

a life not so much lived as advertised

and such deep dissatisfaction, such heartless alienation, around every corner.

if life is not a dress rehearsal, why do we need so many clothes and so much makeup?