blurred lines

download17

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 loneliness of the long distance sleeper

download12

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.

paths, portals, and dead ends

download16

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.

a crisis of identity on the wrong planet

download9

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.

in the beginning

dscf1145

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.