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.

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.

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.

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.

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?

the last refuge of the insomniac is a sense of superiority to the sleeping world

leonard cohen

on good days, with faltering steps, and thanks to the assistance of my flowery fold-up walking stick, i am able to move around this tiny patch of land in my small home town.

on bad days, my king size bed is my universe, my prison and my sanctuary. on bad days i get lost in a state of fever, and am engulfed by nightmares. on those days i reach around behind my back to try to find myself; i am here, but not here. i am drowning.

the problem with dreams is that we don’t get to choose where they take us, or what happens when we get there. (i haven’t mastered the art of lucid dreaming yet. i’ve been told you need to be flying in a dream in order to attempt to achieve this state. as far as i remember, i haven’t dream flown – or not without being in an aeroplane, at any rate – since childhood).

my problem with sleep is that i veer between getting hardly any, and getting far too much. and when sleep drags me down to the febrile place of nightmare’s deepest depths, that’s when the bearings i rely on to keep my head screwed on, and the right way up, truly start to fragment and fall apart.

i am thankful to various films and television dramas in this regard – inception, twelve monkeys, and a recent episode of doctor who with peter capaldi as the doctor, called heaven sent, come to mind – for showing a kind of approximation of my own dream life on the screen. i’m grateful to be reminded that i’m not the only person whose mind, or unconscious, conjures up such strange craziness, such horror shows.

what worlds we take ourselves to when we close our eyes and our breathing alters. i can be only inches from your skin, sharing the same pillow, even – yet i’m in places you will never visit, with people you will never meet, battling demons i cannot begin to describe to you. trying to make sense of no sense.

there are places i’ll remember

the beatles

my planet is not of the common or garden variety. for a start, it is not spherical in form, but more like a pyramid tipped on its side. we have only a handful of permanent inhabitants, while many other folk pass through.

some of the planet’s crucial energy supplies are severely depleted, which means that every day is a practical struggle; it is necessary to continually balance expenditure against recharging of resources. most of the work on the planet is taken up with this task. helpers come in from other parts of the universe with supplies such as food and drink, and to offer much needed moral support.

so far scientists have been unable to explain, let alone resolve, this ongoing imbalance.

fortunately, in spite of the ecological crisis, there are a few aspects of the place which continue to flourish. for example, we have access to the full range of twenty six letters, and the ability to use these in virtually infinite variations. this means that even on days when energy is so restricted that activity has to be almost completely shut down, it can still be possible to send out brief messages to neighbouring planets (otherwise known as the outside world). another plus are the wrong planet’s several appealing satellites, which can be reached on certain days, at particular times, and in favourable conditions. we are proud to boast many positive tripadvisor reviews; despite the odd unavoidable negative reference to our shaky infrastructure and dodgy woodchip wallpaper, most comments focus on our warm, welcoming ambience, and the overall attractive postmodern/retro design style.

time – he’s waiting in the wings

david bowie

i’m confused by time apparently speeding up and up. i’m wondering whether it will plateau at some stage, or will time continue to accelerate to the point that what used to feel like a year seems to go by in a week?

meanwhile, i’ve been trying to come up with an accurate analogy for the struggle of holding on to a sense of self, and self esteem, when dealing with multiple symptoms and restrictions, and endless compromises.

last week i was talking with friends who are in similarish circumstances. we were reflecting on the soul destroying process of applying, and reapplying, for the benefits we need. there have been times when filling in a claim for incapacity benefit, or esa, or dla, has left us despondent for weeks. being forced to focus on all the negative aspects of our lives can make it impossible to see everything else that makes us who we are.

lately i’ve had an image of two very different paths running alongside each other.

one path represents my essence; all the things i am passionate about, my friends and loved ones, the music i listen to, books i have read, thoughts i think, my memories; all the stuff that goes into summing up this mysterious experience of being a particular someone.

the other path represents the mess of all that is involved in being a long term sick and disabled person; the pain, days and weeks lost in bed, the wheelchair, the walking stick; everything i cannot do, all that i am not.

some days i come up for air.

on others i am drowning.

do we know who we are because we remember everything we have been, the stories of our lives? right now i am more confused about these matters than ever. i guess that is partly why i wanted to start this blog – to make a tiny mark to prove i am still here.

and i want to speak to all of you out there who might recognise something of your own struggle in mine.

recently i have realised that the ability to count our blessings is a blessing in itself. especially for those of us who don’t have the advantage of believing in anything. on my darkest, most drowning days, i am grateful for gratitude.

wealth is the ability to fully experience life

thoreau

i live a strange life in a tiny world. i know there must be many of you out there in similar situations. because you are ill, or disabled, or imprisoned, or in some other way incapacitated, your existence bears little resemblance to the one we are shown on television, in newspapers and magazines.  the common representation of this thing we call ordinary life, the usual description of what is referred to as reality, doesn’t mean much to us.

weird, isn’t it, to feel like a stranger in this world of human beings, despite being human ourselves. the advertisements are what i find most alienating; that glittering world of merchandise and holidays, sandy beaches and blue seas, make up and shampoo and slimming, and endless cars; and always aspiring to be a better, more mainstream version of oneself.