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Inconsequential Essentials

I write the following paragraphs as a disclaimer of sorts, a loophole space for my mind, to avoid obsession with some sort of structure or flow that would invariably effect the continuance of writing.

What follows, along with the little that has gone before, will invariably change.

I do not intend to keep to a theme other than honesty, a goal other than sharing my thoughts.

At times this may seem self indulgent, and it very well may be so, but I shall endeavour to be, at all times, completely and utterly me.

My words are not coherent, for in setting them down I rob them of the perpetual coherency held in the ephemeral spaces of my mind.

They shall never be as fluidly and inextricably linked as they are within as, in writing them out for others to see, they lose their inviolable structure of chaotic perfection in exchange for a sense of permanence.

Rigidity and fixed form are chains as much as the most stringent measures of reductionist education yet they allow us to communicate, individual to individual, a shadow and imprint of the myopically mutable maelstrom of the mind.

Even from this previous statement interpretation may arise to glean truisms that I had not comprehended or otherwise discover those that do not exist.

I apply my mind to the page and from the page it is applied to the mind of the reader, the value lost in translation immeasurable but also unique and scintillating.

Even that passage of thought holds a reflection of individuality, showing the mind working in an individual existence.

A shared application of mind is a coupling of individual beings and one of the most fascinating factors in the human condition.

We are forever linked but eternally unique.

Hopefully this serves the purpose of primer to my posts elsewhere upon the page and you, the reader, have not been turned against the idea of pursuance.

Murray

Journeying On

Something about life and its path, not dark, but open.

Something about life and its path, not dark, but open.


This:

Is a drawing I did on the bus yesterday

I used to draw human forms mixed in with natural ones a lot.

I think it started as a way of me processing and coming to terms with the disability that became part of my life at the age of 13.

The weaving together of humanity with nature and the growth, change, cycles and strength within it, especially in a more wild sense, flowed into a metaphor for where I was then and where I was going. It became a subconscious process of acceptance and continuance of self.

These drawings stopped in the pandemic. Things got worse across the board and I lost a lot of my me. Belief in myself and the future fell, and I again lost sight of the glorious wildness that is the path we walk through life.

By disappearing into the trees and fields, gradually mapping a new area, I started to find the solidity again.

In keeping my own company and seeing how I shifted with the changes, my interactions with the world, people within it.

In reflecting light into dark and seeking, allowing, shadows and self when the world burned too bright.

In the pain and turmoil of uncertainty and change taken on, by choice, alone.

And in the eyes, words, arms, trust of those who held me up or let me lay in darkness, yet remained, when I was broken into pieces.

I found parts that had fallen behind, could touch the veiled, riddled through memory, and hold the strength that has always pulled me on. A vision of arching leaves beckoning to see the wonders waiting upon the cusp of each new dawn and moonrise.

Seasons shift and turn on.

Nature will out.

Spirals can be comfort in cycles, not only a fall to the past.

The world stayed and stays solid, the wild places hold true.

When humans faltered, wild bloomed.

Nature will out.

When this image was what I drew, yesterday folded into a bus seat, I was so calmed by it. It was something I’d lost, without really knowing.

I’ve learnt so much of me, my disability, my limits, and I’m excited to know what lies ahead.

Changes will come, sure as the seasons, but the wild potential of the path once again pulls me on.

Murray

Creativity of Consciousness

A Musing on the power of creativity as a force in society and the celebration of individuality.

Are you creative?

We create and we destroy. We live and we die. The world turns on and the cycles continue.

In all of us is the spark of creativity, something that sits below the skin, swirling round the soul, urging us towards expression and learning.

The myth we are often taught by society is that we are not creative. If your creativity does not fit into a fenced area of criteria then it simply ceases to be accepted. Our education system is largely to blame for this with its focus on grades, examinations, and quantifiable metrics.

Creativity is often lumped with The Arts, given meaning only in the beauty of a painting, or the engagement of a play. This gives us more misconceptions, prejudices, and blinders. The creative wonder of mathematics, or any scientific pursuit, so often set as opposition against artistic endeavours, is inseparable from the subjects themselves.

Everything has creativity laced through it. We are all creative. The beauty of our species may be known in the individual creativity that we each bring to life.

So to know the individual, to celebrate the self within a society, why not use creativity?

Look to the things we bring and offer, how we manifest our minds upon the earth. To dispel misconceptions and prejudice. To show that difference is inherent in our existence. To bring us together in wonder at the variety of perspectives we have to enjoy.

Creativity is the expression of that self which no one else will ever possess. Our uniqueness, our personal core, our perfect chaos.

We can only ever be experts in ourselves. We can only ever know an amount of another. With creativity we can build the bridges to come together and share, listen, and learn.

Murray

Alas, I cannot speak

A glimpse into my experiences of living with Functional Neurological Disorder

Imagine silence, your mind whirring but lips still.

Completely aware and awake but unable to communicate.

The only motion permitted by your body the mechanical blinking of your eyes.

To outside perception you are numbed, broken, severed from their reality. You are helpless, lost to a paralysis of physical self brought about by neurological misfire. The conduit between the tumult of your mind and that of the outside world is shattered, your body is not functioning in cooperation with your desires.

Your body is there but not. Pain joins with numbness to dance its way through your flesh. The pulsing of your heart jams its way through the matter that makes up so much of what is you.

The conflicting patterns of sensation and neurological direction pool beneath your skin, filling your brain with shearing screaming excruciation.

Tightness.

Stillness.

Explosion.

Limbs start to flail, spasmodically beating the air before crashing back into their home, their quickstep, staccato jumping sending the roaring pain of exertion through muscles that still exist in a semi connected state.

Your arms beat into your chest like a frenzied woodpecker as your legs swing and pound a treadmill that isn’t there.

Your body screams with tension and your spine crashes into itself, tearing your chest upwards into the sky as your head writhes and nods in sympathetic timing with history’s entire collection of head on collisions.

You can try to speak.

You can try to express the pain.

If you try to stop any part of this then it will get worse.

Your existence is limited to a waiting game, trapped in a body that is rebelling against you, alone and silently screaming for the initial stillness of your body in silence.

This is something I experience. In fact I’m writing the main body of this the day after an episode. It’s not that regular, though since I wrote the initial parts of this post (15th March 2020 so, ya know, stuff happened) it has increased both in regularity and severity. The full body spasming only started this year.

It is the most extreme way that my Functional Neurological Disorder (FND) manifests itself and it is terrifying.

I’ve lived with this disorder since the age of 13 (I’m 28 at time of writing), although it was only diagnosed as such when I was 25. Through the years it has gone through various changes, initially just being intermittent left sided paralysis that lasted for varying lengths of time.

Over the years, when having an ‘episode’, I’ve experienced sight loss, severe pain spikes, balance issues, and vertigo, along with various other symptoms.

These days I have constant pain in my left side (I use left side in quite a literal sense as it does include my face which, when in times of paralysis and rightly so, used to cause quite dramatic reactions from hospitals) and almost always altered sensation there as well.

I’m currently working with a theory that the FND episodes stem from all my types of tiredness being simultaneously out of sync without an avenue of reset or balance.

I’m now far better at managing it than I have ever been.

I understand what causes it and how to prevent or plan around it more than ever before.

This doesn’t help with the really quite naff-ness of being in a full episode but it at least allows me to live and do at least some of the things that have been impossible for so long.

I’m not sure what the future holds for me with this disorder. It may continue to deteriorate. The impact on my physical health may become a larger factor.

I cannot be sure.

I do know that I am better than I have ever been at being me. And that me is someone who wants to challenge it, learn about it, educate around it, and accept it as part of my life.

Please feel free to ask questions on anything here or reach out about anything it’s raised with you!

I’m off to drink the mug of coffee sitting next to me that’s now completely cold.

Murray

The Promethean Gift of Society

I often feel treated like I’m a bomb.

An unexploded explosive lying in the imagined path of people’s lives.

To be treated like you’re unsafe or going to go off unexpectedly is incredibly dehumanising. As others approach they are holding you at arms length, weighing up your pros and cons, trying to figure out what makes you tick.

Assumptions are made based on arbitrary questions that are asked. These assumptions are then carried forward and used to take decisions away from you in purported attempts to make things easier, instead of asking further questions. Questions are avoided because of the fear of what they might light and how fiery the answer could become.

The process of conditioning someone to believe they are a particular thing relies heavily upon how they are treated. Yet, people seldom see that if you are treated as though you are dangerous in some way, you are likely to not only believe it, but become it. Even if it is just in the eyes of the beholder.

In this way the view of a ‘bomb’ is layered and strengthened around the outside and pain is introduced to the person inside.

In the treatment of others we can introduce pain if we do not consider the mind of the being with whom we treat.

How much pain could be avoided if we were to simply ask, in plain honesty, ‘what do you want?’.

And then, in acceptance of our place as the outside viewer of a complete mind, fully respect the answer?

The social conditioning of society can only be blamed for so much. We can always choose to accept another’s view, and should do so, if the matter primarily pertains to them.

My shaping as a bomb has been varied and manifold, still persisting in new relationships to this day.

But, if people took the time to move closer, they wouldn’t see a bomb anymore.

The cartoonish ACME explosive would appear as it is, more akin to a beetle or woodlouse with dark carapace shining in the sun. A shell that has been built to protect against the burning glare of the outside world, the shadow swathing it a place of refuge and calm. Its strength not in its bite or its bark, but in its solidity of self, its staid ability to stay whilst still exploring the world around it and shining in the light of day.

Murray

To Move Within The Dark

I have always drawn for enjoyment.

Over the last year or so, through all that brought with it, I realised that I also create for cathartic effect.

I deal with things that have inveigled their way into my mind by letting my emotions fly. Cracking the dam and letting the flow be free.

Over the years I had learnt to throw up a barrier around my emotions, for they burn with such intensity that I can lose sense of much else about me in that moment.

Part of who I am, my neurodiversity, my being, is intensity of emotion. I feel things very strongly.

I describe it as passion level emotion. So I tend to feel joy instead of happiness, fury instead of anger, despair instead of sadness, love in the place of interest, and so on.

My awareness of this has improved over the years, especially since I realised it is just a part of me, and my ability to manage it has improved in the same way. I will only throw something behind the dam if it is too big an emotion to take at that time and, although that parameter shifts with my levels of overload, I am aware that it has happened and will need to be addressed when possible.

This last year has been riddled with those moments. Even without the worldwide turmoil of the pandemic, life has not pulled its punches upon me.

So I have fallen into my patterns of music and drawing to manage.

I set up the music, emotive pieces with personal connections from a wide variety of genres, with different playlists for different emotions needing to be felt, and I sit down with pen and paper. Most often just a standard black biro and my sketchbook, I give my mind to my hand and let loose upon the page.

I feel the emotions bursting from me as I draw, the erratic movements of my hand dancing out a rhythm of passion and pain as shapes take form from within my mind. Never clear at the start I learn the piece as it goes, the imaginative unknown made sure in ink.

The process ties my emotions to my head, causing imagination viaducts to form. They come together and create and move me forward, to revel in the fire of our souls.

In this way my creation is cathartic, a sort of self applied art therapy that I have done without prompting for as long as I can remember. My difference makes the passion and my awareness lets it play, my individual core is made whole.

After a traumatic collision with a different way of seeing this part of me, one that denied that it had any value and saw only danger in the acceptance of the dark, I wanted to share a little of my core.

I do not see this as a flaw or something to be fixed, it is me and I am it and the twain shall never tear.

I can accept this part of me and see what good it brings, so please consider dark and light and what shades may dwell within.

Some of my moments from the last year or so:

As ever, please do comment with any questions or comments, always happy to open a dialogue and discuss what I share.

Murray

To Call On Courage

I was called courageous yesterday.

Not for saving someone from a burning building, or facing down a threat to someone’s safety, or telling the truth when all signs say to lie.

I was courageous for being open about who I am.

I was telling a neighbour that if they wanted to catch me in the evening it was best to avoid 6-7 as that’s when I tend to eat. From this they picked up that I have structure to my day and remarked that that’s an admirable thing. I replied that I’m Autistic and that, for me, that means I like to have routine.

This is when courageous came in.

I was nonplussed for a second and expressed my confusion.

I was courageous for just saying it like that.

Being open about it.

I explained that I am always very open about it, it’s a point of determination for me, a chance to educate, normalise, and elucidate the level of misinformation and bias that exists.

I think this set them off balance a bit, a reaction I am often faced with when someone new collides with this honest and open way of being.

To talk about oneself without pretence, especially if it touches upon a sense of place within the world, seems to be such a rare occurrence in day to day interactions.

When it happens people are nonplussed or unnerved, sometimes desperately seeking the sense behind the facade that must be there, the wall of words that hides a vein of subtle meaning.

To be open about yourself can be hard, it can be painful and actively dangerous.

I am perhaps blessed by the lateness of my Neurodivergent revelation as it means I cling to it as a mast in a storm and a banner in the crowd, it was sense after years of confusion and I hold tightly to its truth.

So for me it isn’t a matter of courage to talk about it or any other defining part of who I am.

This encounter has played around my head ever since. In trying to glean as much understanding as I can from the moment and my reaction to it I came to the following conclusion.

I do believe the words were said from a place of good intention. The impact is that to my mind they ring with the sound of unwitting ignorance and misunderstanding, and those factors always make me invested in change.

Murray

Catharsis is not a Curse

Before it all begins,

I wrote the main body of this post a while ago, engaging a frustration I was being strangled by at the time. It is a long one and is intense. Within it are some thoughts that I wanted to string out in a more coherent fashion today, namely any threads on the predisposition of society towards repressing arbitrary negatives.

I considered taking the post apart to get to the bits that worked within the idea rolling around in my head but ultimately decided against it, I get attached to a flow as it has been and find it hard to go back and doctor it. I also wanted to say that there is an end goal to it, a general guiding principle that runs through, a splash to the water when it falls, the intensity is vehicle for a thought process.

And so I am writing this preface.

Every part of this post is still very relevant to my life, but to fit my own ordering, bridging the nodes of the nebula, I put it now as a train of indignation against this fixation upon shutting down the mind into arbitrary factors that suffocate the need to sometimes just feel absolutely bloody awful.

– – – – – – – – – –

Asking for help with Autistic issues often feels like screaming into a room of people without eyes or ears to hear you. Or trying to explain the nuances of a word that cannot be directly translated into another language to someone who is just repeating that word back at you over and over and over.

I am struggling at the moment with the lack of understanding.

The lack of understanding about what autism is or can be, how it is a different part of each autistic person, how it effects different things for each autistic person, and how it is something that we are, not something that we have.

It is also the lack of understanding that I have about it.

I don’t always know what parts of me are my mental health problems and what are my autistic traits, where one ends and the other begins, and if that is even possible to define.

One thing I really noticed when I got my diagnosis is how much misinformation there is out there, how many prejudices there are, and how many systematic constructs exist that actively stymie the growth of knowledge in the area.

I noticed many of these things because they were things I had believed, had heard and had experienced without really thinking much of it.

The current climate is one of fear and uncertainty. Everyone is on edge in some way. Things cannot be planned. Routines are decimated. I talk to friends with mental health problems and I end up feeling guilty.

My life is one of isolation and boredom, kept wrapped in those bubbles through a suffocating binding of catch 22 situations and getting stuck in the cracks of life. So now isolation and boredom are widespread I feel I should be fine.

It’s not that much of a change to my normal life, is it?

Why then am I not just ticking along perfectly alright, even able to help others with ideas of what to do and how to keep going.

The key thing here is that it is not the same for me. I am autistic and it is exceedingly difficult for me to have even the slightest change to my routine. Even just the loose routine I have so that I don’t end up trapping myself in a spiral if I can’t do something at the given time.

But I see others managing their days, being productive, doing various forms of exercise, and all these things that we are told are things you need to be doing to be succeeding at life.

So I feel guilty.

I am aware of one of the biggest problems that digs my holes for me, I can’t accept the extent of my own problems.

I tell people how I am but feel awful if I go into too much depth, fearing that I will hurt them in some way or scare them away or just get a ‘oh I’m sorry, that must be really hard’ and a pitying look. Or someone will misconstrue something I’ve said and I’ll end up, for example, with no one ever hugging me or touching me at all.

One of the biggest fears is that people won’t believe me.

They will think I’m lying.

How could all these things be happening?

You do so much whenever I see you!

But I’ve seen you do that before?

Why didn’t you tell me?

I am a 26 year old who has sporadic loss of movement and speech that varies in intensity.

I hear screaming, singing and speaking when no one else can.

I see things that no one else sees, things on fire, faces melting, and solitary figures that range from shimmering shadows to companions of horrifying but comforting presence and appearance.

I find focussing on one thing by myself very difficult unless it is the ‘right’ thing to do at that time, governed by some inner impulse, and then I am extremely focussed on it and, where applicable, productive in it for an intense period of time.

I get migraines from too much light. I throw up from certain textures going in my mouth.

I am in pain when talking on the phone but I cannot find the words and obsess over them when messaging.

People I don’t know touching me without warning makes me want to scream, and often the same with people I do know.

I get extremely warm but also very cold.

I feel small pains as the most intense agony.

I find socialising very taxing but get exceedingly lonely.

I spent 25 years being told by the world that I was too sensitive, fussy, stroppy, not trying, unwilling to cooperate, selfish and arrogant.

I was diagnosed as autistic at 25, freed from some self doubts but left with a soul consuming grief for all I had suffered because I did not tick a box guarded by stereotyping, misinformation and wilful ignorance.

I was lost in a half life for years because my problems were addressed with medication and nothing else.

I have large sections of my past that are veiled as if behind a thick fog, the memories are there but inaccessible when reached for. Sometimes they appear without warning, brought out by any random thing, and I am left broken or experiencing the memory again, laid over the top of the present day, it’s not always the bad ones that break me and it’s not always the good ones that I relive.

I sometimes lose myself to an outer feeling, an other not entirely separate but overwhelming and invasive, whereupon I have to fight for my body, my control is subsumed by a battle that feels as though it rips through my mind and self, and I am only dimly aware of this reality until I resurface. If I lose that fight, or it approaches so quickly that I don’t have time to ready myself, then I am not there. My body explodes into words that are not words, reactions that are not mine, actions that I am only dimly aware of, as a screaming pinprick in the corner of my head. When I slam back into place, re-emerging as the controlling party, I scream.

I cannot accept the extent of my own problems because I do not have a simple way away from them.

I’m doing fucking well just being alive today.

I will accept them in time, slowly and in my own way because I’m just going to be learning to live with most of them.

But for now, I’m starting by being more open about it all.

….

Ps/note: After writing this I felt much calmer than I had all day. I did have a resurgence of recollections saying ‘you shouldn’t be dwelling on it’ but I realised that I have listened to that to the extent that I never allow myself to even begin accepting the problems.

I am aware that listing things I struggle with could be depressing to read and be viewed as vain or self indulgent. It probably is very self indulgent. But I have listed them as facts. Any embellishments of eloquence that came in functioned to allow me to communicate things that I do not understand and do not have words for, to translate things that don’t exist in sentences and written form in my mind so that I can share them. Assigning arbitrary concepts of good and bad, depressing and uplifting, can serve to tie down exploration and explanation, so any time that I do that, it is to avoid my being distracted onto a digression of thought, something that I am very much prone to doing!

– – – – – – – – – –

I wanted to add in at the end here, if anyone makes it this far but also for my need to be clear, everything inside the dashes is from a few months ago, so some things such as my age are now slightly wrong and there have been developments in some areas. But as I said at the top, I get attached. 🙂

I would be thrilled to hear from anyone who this has struck a chord with or just any thoughts on the matter.

We often shout into the void in the hope that we might hear an echo or for a moment, feel another reflection.

Murray

Authentically Proud

It’s Autistic Pride Day. Yay.

What that is or what that means feels like it’s based on a personal theme.

When I found out I was Autistic, the 30th of July 2018, it was a moment of relaxed revelation.

Sometimes something just fits.

I had been fighting my urge to research the possibility since it was first fielded the year before (I’ve never liked an unanswered question) but even then, with just the information I had absorbed over the years, it felt right.

I believe that day of diagnosis will resound within me for a very long time, I currently hold it as one of the best days of my life. It represented answers, hope, freedom and a chance to be myself without the strictures of ‘normality’ crushing my soul.

The years of pain and turmoil, the scars written upon my mind, the splintered heart I carried in my chest, all suddenly began to seem more like a trial and forging process than a wasted 25 years of existence.

I could now look at the world in a new way from a place where I knew more about the perspective from which my perception came.

I know I am someone who will always seek to care for others and listen to those in need. I have a strong sense of right and wrong, injustice and compassion.

I know I have an eclectic set of skills, I’m a jack of being able to do pretty much anything to a certain extent but am always looking for the other links and pathways of integrated existence.

I know I feel things very strongly, my emotions tear through me and give fuel to my mind, yet I am also a lover of logic and reason, a passionate logician with a wildly shifting fulcrum point.

Most of all I know I am an individual. We are all individuals. My favourite trait of humanity is the uniqueness of each person, a ball of wonder held as a soul.

So I think for me Autistic Pride is acknowledging that fact.

We, as humans, are all unique and add colour to the stars, a point of perception that is our own, ours to keep and hold but also add in confidence to the array of our species.

We are all ourselves.

How does the mind…

It’s a worrying time.

My escape from overwhelming emotion is often found in creative outlets, most commonly drawing.

I put pen to paper and music on next to me. I go with the whims of my hand and brain, my mind leading the process in a cathartic river of sub conscious control and flow.

It helps.

I forget the world for a while. I can breathe and exist in a place of simple instinct and letting of built up emotion.

As I come back I am drained but left sated, my mind able to tumble on until the need rises once more.

I’m always interested to hear about other people’s ways of coping with tumultuous times, especially if they are similarly indulgent of creativity, whatever the form or type of approach!

We are all creative creatures, individual in our wonder.

Murray

Resetting the 5 in indulgence of the 6th

Sometimes I will go to my bed and get in.

I make the room as dark to senses as possible, lights out or low enough to make ambient light fade away, sound blocked by a hood that also serves to soothe the feel of my ears and hair in the air.

I lie on my back, close my eyes, and light the fire in my mind.

The pathways of my being open up around me and I slide along them, jumping slightly to angles that flow past each other.

In this way I may sort a tangle or simply disappear for a while, realising I was gone when I return to the world of physical senses.

The lines of life are not constricting or colliding on the paths I flow through, they are not opposed or clashing, juxtaposed or even parallel, they are just there and not, one and the same within a streaming fire of glowing life.

If the world pokes through I snap back and, bereft of the freedom I flowed through, suffer disorientation with emotional backlash against the illogical constrictions of this world.

All is one and we are defined in ourselves.

Murray

Ps. I am learning to do this to a lesser extent without sensory shutdown, but I have to engage physical manipulation and action to prompt various aspects and it becomes very quickly exhausting.

It does mean I am able to do it out and about. Hopefully the optismisation of this method will continue as I exercise it.