Thursday, 25 August 2016

Days of Gratitude - Autscape, Friendship, And Finding Freedom In A Cemetery

I am posting this on August 25th.  Today would have been my mother's 72nd birthday.  She died a few days after reaching her 70th birthday.  Facebook keeps giving me memories to share each day and most of them have been status updates about the events leading up to my mother's death.  Every day I am given the option to share some painful circumstance.  I haven't been sharing.

The morning after my mother died I had to return from Sussex to Newcastle, leaving my brother to deal with everything for a while.  On returning to Newcastle I attended the appointment at which I was officially diagnosed as being transgender.  It's tempting to wish that my mother had lived to see that day and the two years that have passed since then.  But no amount of wishing would make it a reality.  After that appointment I returned to Sussex.  I wrote the address for my mother's funeral and reading it was a privilege - and quite a challenge to not fall apart at certain points in it.  I posted the address in a post on this blog and it also appears here, the final ever post on my mother's blog which she lovingly wrote nearly every day for quite a few years and filled with family and friends and many photos.

That all happened two years ago.  This is now.  And these are five days of memories for this month, to add to the memories Facebook keeps on recommending I share with the world again.

18th August

Grateful for Autscape. A lot could be said about that.

Grateful though to spend much of the afternoon not at Autscape!

Amanda and I walked into Settle, relaxed together, ate ice cream and then walked a little by the river.

We found a great rock to sit on in the middle of the river and I even had a free thirty seconds for stone stacking, reminding me that I want to take myself off for a quiet day doing it.

19th August

There is much I will miss. Much to think about too.

But I am grateful that tonight I will sleep in my bed.

Farewell Autscape for another year. Tomorrow I have to attempt to think about food again.

Grateful too that this time round only a week will go by before I see Amanda again - for a Christian festival!

20th August

Being looked after when arriving at the meditation group in a state. Sitting alone in silence helped and then good people and lunch.

Grateful for the people who set up that group and for the way the enterprise will be expanding very soon. There will be a meditation centre in the city centre and there are great plans for the future.
Also grateful to look out of the window.

21st August

Grateful for missing the bus home after the Sunday Assembly social and going a different route back to the Metro that turned out to be interesting even though totally an incorrect route.

This led on to becoming sidetracked in a cemetery I have been meaning to visit almost since we moved here.

Also very grateful that a year ago today I met a very wonderful woman. I couldn't be more grateful than I am.

22nd August

Grateful that one year ago tonight I danced, played and sang barefoot in a big thunderstorm.

She had encouraged me to do so. She didn't accept my refusal.

A year on and we have a most marvellous and undefined relationship centred on a stunning magic friendship.

Wednesday, 24 August 2016

A Little More About Autistic Pride And The Sometimes-Desire To Be Cured

I am mainly posting this so that I don't lose it.  I posted this a while ago in a Facebook group that celebrates and embraces neurodiversity.  I've made a couple of changes to post it here, but it's sustantially what I posted on Facebook.
I'll just make clear.  Autism is part of the neurology of autistic people.  It isn't a thing to be cured.  It's a complex beast - and isn't really a single beast at all.  It is something that contributes to making me the person I am, and that's not a bad thing.  I guess I'm not alone in the feelings I express.  I guess most people with a disability of whatever kind will have had days when they just want it taken away from them.  They may fully accept themselves but still, when passing through fire it's hard to say "Hoorah, I am being burned!"  I accept myself more than I have ever done before.  I do.  As a result I am happier and more content than I have ever been before.  But:

Self-acceptance is compatible with wishing for change.

The Facebook post:
Please read this before clicking the link at the bottom. It contains explanation and a couple of warnings about what I've written in the post the link leads to.

I posted one of my recent blog posts in a group subtitled. "We have our own views too! Autistics speaking for OURSELVES!" I posted it as an autistic person, speaking for herself, an autistic person who at times would love for it all to be taken away.

It was accepted by a moderator and appeared. Then it vanished again within five minutes, deleted by another moderator presumably. I guess that in that group only some view from autistic people are allowed. I guess that autistics are only allowed to speak for themselves if they have a particular opinion.

Otherwise they aren't allowed to speak up. The question was raised by a speaker at Autscape as to whether the autistic community is truly inclusive of all autistic people. Do we really accept ALL autistic people even if they're difficult, no matter how disabled they are, or if (shock!) they dare to have different beliefs, frustrations and worldviews to our own?  A good question, posed by someone who has been a very active part of "the autistic community" for twenty years.  He knows his onions!

On the basis of my experience today I have to say that it can be exclusive and we can cast autistic people into the outer darkness when they don't fit a narrow view of acceptability.

I'm going to share my post here. I know that most will disagree with it. I know it's not a popular view. But that's okay. I expect comments. I expect discussion. I expect both appreciation and distaste. That's fine. It may even be deleted by moderators who feel it's not the kind of thing they want an autistic person to be saying in their group. That is their privilege.

Warning: This post does talk of cures. Of the times when things deteriorate for me so much that quite frankly a cure would be a lovely thing.

Warning two: I do swear in this post. I try not to swear much but I was free writing everything and strong feelings were arising and some language fell out that isn't for sensitive ears.

But of course I'm proud too, and positive and know that a cure is an impossibility and that being autistic is a part of my identity, my human personhood. Sometimes I can celebrate that. Embrace the whole of what it means to be me. I wear an autistic pride badge and an autistic pride bracelet pretty much every day. Because I am proud.

But on the bad days, honesty compels me to say that I would prefer it if all those disabling things could be taken away just as much as I did before I had the word "autism" to help me understand me. On some days, to say it's "a different way of being" or to say "I'm differently abled not disabled" just doesn't do justice to how much of a struggle it is. I am disabled. I am. Yeah, I am different not less. We all are. And I've blogged about that in the past. But sometimes the difference feels overwhelmingly dreadful. And oftentimes it is disabling and no amount of accommodations would ever mean that it isn't.

So that's me. Being honest.
My previous post:

Extra to the Facebook post:

A link to the talk at Autscape, by Martijn Dekker, with a link there to all the slides shown during the talk:

Head to the homepage there to find out more about Autscape.  It's the only event of its kind in Europe and I am completely thankful that I was told about it in time to get there last year for the first time.  Next year it will take place at a different venue.  There won't be all the gorgeous scenery we've experienced for the last couple of years when it was held in Giggleswick, near Settle, North Yorkshire.  I'll be blogging some pictures of the area eventually.
Next year it is, I understand, taking place in Northampton.  So I won't be able to escape for a couple of hours by going up a hill.  But I will be able to escape by popping into the centre of a town where I used to live and seeing whether it has changed at all.  I may even take a picture of the plaque that commemorates the school for dissenting ministers run by Philip Doddridge - some of whose words appear in the pages of The Sacred Harp.  Maybe next year I could do a lightning talk about shape note singing.  No.  That's not quite right:  Definitely I could.  But maybe I would!  Because everybody should know about shape note even though many of them will learn that it's something they strongly dislike.

Days of Gratitude - Art And Autscape And Sparklies In The Dark

Five more days of gratitude.

The first of them really did go wrong.  I had good plans - to go and sing shape note music in a chapel at Beamish Museum.  Due to a miscommunication they didn't come to fruition and I was left at home with a packed bag for the day.  I could have stayed at home.  But decided that they would be another plan.  So I went out and let the plan develop as it happened.  The replacement plan didn't go to plan either in many ways.  But I was still able to have a really good day and visited somewhere I've never been to before.  The art looks great on the walls of this room I'm sitting in.  The cheap art.  Very cheap.  The total cost of the five pictures was £4.50.  I'm actually quite proud of finding the bargains.

The five days ended at Autscape, the conference/gathering of autistic people that runs each year.  I must point out at this point that the friend mentioned who couldn't get to Autscape was not a Dalek.

13th August

Today's plan went completely wrong. An excuse for inventing another plan.

I walked on Hadrian's Wall.

I sat by a river.

And I bought cheap pictures.

14th August

Tynemouth Market
Grateful for a poetry book and a few pretty stones from Tynemouth followed by a short wander.

The gateway to Tynemouth Priory.  We didn't go inside.

I was too tired to actually walk by the sea as planned.  But that didn't matter.  Seeing the river was good and those two obviously enjoyed it.

15th August

A half cheat.

Grateful for socks. Grateful that in the last year I have stopped wearing black socks every day and now wear all sorts of colours. And sometimes giraffes.

 Grateful (and this is the cheat half) that within the next 24 hours (tomorrow) I will be at Autscape for a few days of autistic space, something that is a very rare thing in an allistic majority world. Last year's Autscape changed things for me in unforeseen ways.

16th August

We are at Autscape.

This year I know some people already, have child with me, and a friend from Newcastle.

Two pictures from the day.  The first was taken at the informal badge decorating.  The second was taken at Sparklies.  Photo credit to @quarridors

Check out this Vine video of what the lights look like through my heart glasses.  Through my difraction glasses they look even more crazy.

17th August

Grateful to be at Autscape.

Maybe most grateful for the hours spent NOT at Autscape.

Amanda and I went to spend a couple of hours in Settle with a friend who couldn't make Autscape this time.

 And then we paddled in the river.

Tuesday, 23 August 2016

Days Of Gratitude - Treating Winefride. Taking The Ferry But Not To The Baltic

Readers of this blog will be unsurprised by the next sentence.

I am behind with my blog.

Here are four more days of gratitude.  Were they really less than a fortnight ago?

9th August

Grateful that people seem to like the most recent blog posts by Blob and the one I accidentally wrote about biphobia this morning.

Grateful to have been able to take Blob Thing and Winefride on an adventure. She wanted to go on the ferry too. Who am I to deny her request?

Winefride poses with a giant lion.

He was very friendly.

Blob and Winefride enjoying themselves.

 Grateful that I just about kept my brain functioning when out. Just. About.

Grateful that nobody has yet locked me up in a psychiatric ward for the way I talk about, to, and as Blob Thing!

10th August

Grateful for charity shop books of a kind that would almost have been an instant eternal hell sentence for the good reasonably fundy I once was. Almost.

Grateful, not for the first time, for free tea and cake at John Lewis, and for finding a way out of that shop that doesn't involve heading back into the rest of the shopping mall. Woo hoo!

Another grateful. I just thought of it.

Six months ago today it was Ash Wednesday. The first day of my official Lenten fasting from church.

Very grateful to have been able somehow to take that step. Six months into my six week fast I have no regrets about starting to learn what life without regular church attending might look and feel like.

11th August

Grateful to have gone out with wife and child today. A rare family outing. We didn't do the planned activity but found things.

Grateful too that I am quite pleased with Blob's post today ( blobthing.blogspot.comI think) even though it entirely didn't go to plan.

Going for the obscure pictures today! 

12th August

Grateful to have got into town long enough to gain a shorter fringe, or to lose a longer fringe.

Also grateful to start writing something in the cathedral cafe. On paper rather than on the walls. And to continue for a while at home.

Grateful to have had just enough spoons to be out for these things, to find two things to snap a picture of, and to buy this hippo.

Monday, 22 August 2016

In Which Clare Says Something Unpopular About Her Autistic Life

This one is hard to write.

It might not be popular.

What the heck?  I'll just free write it and see how the words come out.  I hope that my community of autistic people will hug me rather than crucify me.

I am in my mid-40s.  For pretty much all of my life I have struggled.  Every single day.  Things used to be a lot worse.

I used to struggle with depression.  Every single day.  Even on the days when I wasn't actually depressed according to any diagnostic criteria there was a dark, dark shadow falling over me and I knew that the depression would return at some point.

I did not like myself and believed that I was, fundamentally, some kind of monster.  As a result I embraced a conservative version of a faith that bolstered my own belief.  It said that yes I was, fundamentally, corrupt.  An evil being, deserving only to burn for eternity in a hell so awful that it was beyond imagining.  That's what the faith taught.  It taught that we were all like that.  Evil.   But it was okay.  Because it preached a God who gave a way out of the consequences of our own disgusting sinfulness.  It preached a solution.  Not necessarily to our own evil.  At least not in this life.  But a solution that meant God wouldn't be angry anymore and wouldn't throw us all in the fire for ever and ever and ever.  I already believed in my own monsterhood.  And so I embraced that faith thoroughly.

Yeah, I did not like myself.  And conservative Christianity gave both hope and an excuse to keep on saying mea maxima culpa.  I have grievously sinned.  And so has everyone else.

That all changed three years ago when I embraced and welcomed myself as a transgender woman.  The dark shadow lifted for the first time in my life.  In one day it was gone.  It was like a miracle.  A miracle I had prayed for over two decades of faith.  In many ways it was a miracle.  For someone who believed as I did to say "Yes, I'm transgender and that's okay," couldn't be described better than with a word such as miracle.

I had already begun a process of healing, of moving from self hatred, self abuse, hopelessness that I could ever be truly happy or content.

From that day I began the process of healing, of coming to the point at which I could honestly say I both love and like myself.  The process is still not complete three years later.  I have come a very long way.  But there are still moments.  There are still unfair self critiques.

The shadow had gone.

But that didn't mean everything was fixed.  Yes, I had a long spell of euphoria.  A long period of exploring the new freedom to be myself.  And - in amongst all the fear, the verbal abuse, the struggles that most transgender people share - all of that was wonderful.  More than wonderful.  Today I don't quite have the words to describe what it is like to live under that shadow, that crushing weight, that night of darkness, and then to have it all lifted away and to finally see the sun and know that the shadow will not return.

But after the euphoria, then what?

Then I had to look at myself honestly.  And see that many of the struggles I had always known - every day - were still there.  Social struggles.  Sensory struggles.  Anxiety struggles.  And removing my depression, removing my self-loathing, didn't remove these struggles.

And these were things I had been trying to solve for most of my life.  They were things I had received therapy for.  I had read the self help books.  I had prayed almost unceasingly at times.  Through the treatments for depression (which never worked because they didn't tackle the cause) I also sought treatment for my own struggles, struggles I thought intimately bound up with depression.

I looked.  And it was all still there.



And although I didn't talk about them with everyone like I do now, they affected my life profoundly.

People didn't know.

My coping mechanisms and the masks I wore made it look for the most part that I was reasonably okay a reasonable amount of the time.

I struggled on.

Social struggles.  Sensory struggles.  Anxiety struggles.

I wanted them solved.

To put it bluntly:   I WANTED A CURE.

And then, nearly two years ago I started to think about myself another way.  I got talking with some people about their lives.  Their problems.  And I realised through much thought, much discussion, much reading, and much to my surprise and shock, that something which was true for them was true for me too.

They were autistic adults.

And I learned that I am an autistic adult too.  I'd been putting off learning that truth for many years.  Because of stigma.  Because of shame.

The process of realisation and acceptance and then seeking diagnosis took much of last year.

It was incredibly difficult, far more so than anything else I have ever done in my life.  I thought it would be pretty easy but I turned out to be completely wrong.  Hey, I've gone through the gender transition thing.  At least socially, although the medical side won't be done and dusted for a long while yet.  The medical side is simple.  The social side is complex.  And the acceptance of myself as Clare, when it finally happened, was quite easy.  Gender transition isn't easy.  Surely a little thing like autism would be a doddle after the whole changing my name and wearing frocks thing!


Now that was hard.  Excruciatingly hard.

One word changed everything.  Every single aspect of my life and my being needed to be reexamined in light of that word.  Everything became open to intense scrutiny as I began to understand myself a lot better.

It was hard.  It is hard still.   It's been ten months since the official diagnosis.  I am still working through the ramifications.  People tell me it's a process that can take many years.  People agree that it can be tough.

But this new knowledge was wonderful.  Totally, beautifully wonderful.

Now I had an explanation.  I had a reason why things had always been as they were.

There were so many things I had always felt guilty about, or ashamed about.  And now they had a word.  They had a name.  There was a reason for me being as I was.  There was no cause for guilt.  No shame.  No whipping myself about social struggles, sensory struggles, anxiety struggles.

And in that I could breathe.  In that I could find pride in myself.  Autistic pride.  I hold it still.


Social struggles.  Sensory struggles.  Anxiety struggles.

Every single day.  Without remission.  Without rest.  Without any break at all.

There are much better days.  There are much worse days.  But they are there.

In some way they will always be there.  Always.  Always.  Fucking Always.

This is my autism.  This is how being autistic plays out now.   For forty years.  For many years to come - hopefully many, many years because I would dearly love to live as many years as someone who knows herself as an autistic woman as I did as someone who lived as a man and would never have accepted the autism label.

And what are these struggles?

They are the very things I fought against for so many years.  They are the thinks I wanted a solution for.

I wanted a cure then.

Now they are named.

And I know there is no cure.

But sometimes.  Some days.  When things are bad and I know I have the rest of my life to experience it all.

On those days.


Why should I not want a cure?  I wanted one before I had an explanation.  Why shouldn't I still want one?

It's irrelevant in a way.  There is no cure.  Being autistic is a part of my identity and it always will be.  There is good in that.  There is.  And I happily wear my autistic pride badges and bracelet and often a necklace that just says "Autistic".   I recognise that autism gives me gifts as well as hardships.

I am proud of me.  And I am proud of all the other autistic people who struggle every day, and all the autistic people for whom autism is far more debilitating than it is for me - for the ones who will need twenty-four hour care every day until they die.

I am proud of them all.  Because autism is fucking difficult.  For me it is that difficult every day.  Every day.

And on some of them.  If I am honest.  As I am being publicly honest right now:

I WANT A CURE.  A fucking cure so I don't have to endure what I endure.  Yes, one that would leave my personality intact - which would probably be an impossibility.

I say that knowing that it's not a popular view.  We're all meant to be proud.  We're all meant to be autism positive.  We're all meant to cultivate our autistic space, autistic identity, autistic culture, to fight for acceptance not just awareness, for accommodations to help us, to say that we're autistic and we're bloody wonderful.

Yeah.  I can do all that.  And I will keep doing all that.  Because, as the saying goes, we are different but not less.  I believe that.  Firmly.  Without hesitation.

And yet.

On some days.  I want a cure.

There.  I've said it.  The unpopular thing.

[1611 words - far more serious ones than the 2700 written earlier for Blob Thing's blog.  Read those words for light relief.]

Friday, 12 August 2016

The Beginnings Of Story: Harmonising The Crack In A Bell

This morning I sat in the refectory of St. Nicholas Cathedral, Newcastle.  I read for a while and then put my book down and picked up a pen and a piece of paper.

The idea was to write down five words that I could see around me and from those words write a story.

The words were

Bell,   Crack,    Exit,    Harmonising,    Coffee

The first of the words wasn't one I could see, but the cathedral bell chimed the hour just as I was about to put the tip of my pen on the paper.

I sat there in the refectory and began to write.  I sat at home and wrote some more.  It's not quite free writing this time.  This time I've actually done some thinking about it!  And I've even read through my words to see whether or not they are completely awful.  It's not an ideal situation.  They're too fresh in my head to be able to have much of a clue whether or not their awful.  I might look at it again in a few weeks and cringe deeply, only not deleting the file out of a sense of completeness in a long exploration into the experience of writing.

This is the beginning of the story, formed from those words.  First version.  Raw.  Yeah, I think that highly of you all!  You're getting the raw version.  The whole uncooked potato.

So far I have included zero of those words but they are there in my head and they are leading me into a story that I haven't imagined yet.  Four of the five words are anyway.  I confess that coffee might be binned in much the same way as I would bin a coffee chocolate from the selection box.

I'm guessing that the pace would pick up in whatever comes next.  And whether anything comes next depends on my head.  Whoever this person is - I don't know who they are.  But I seem to have laid down a few clues for myself and would like to find out about them.  That said, I want to find out about the mirror woman too and need to know if the shopping trolley story might have a happy ending.  I might manage to find out one day - if I can make enough time between Blob Thing's adventures and him wanting to write long blog posts about them.

Before the first and so far only 1300 words of a story, a photograph.  It has nothing to do with the story.  Unless the story turns out to have a similar tower.  But if I don't include it then the photo included with this post when it's shared on Facebook and Twitter will be my profile picture from 2013.  It's a decent picture but it could dearly do with updating and I'd prefer this picture to be the one.


A mind rising from nothing. The sweetness of annihilation. A featureless oblivion.

Nothing and yet everything. In the blank canvas an infinite potential of image. In the white page an unfulfilled vision not yet dreamed where words and colour and even music may come together in a plenitude of beauty or ugliness.

An uncreated mind, empty. More full than it would ever be again unless returned into the void, into a placeless place where even description is beyond describing.

A mind rising into chaos. The noticing of its own existence. Those moments of wondering what form that existence may take. The torrent of thoughtless thoughts, of shapeless shape. And then remembrance. The mind existed before annihilation. The mind had form, shape. It had ways of being, preconceived, set hard in neural connections formed through many wakings.

A mind rising into reason. It's quick conclusion that it knows what it is, knows what manner of creature it owns, that its life is a coherent series of events. Today follows yesterday. Usually. The mind realises that sometimes it hasn't always happened that way.

This mind knows. As much as a mind can know.

I am here. I am myself. I am this person. I have lived in this body and live in it still. Everything is as it was before I slept into that bare nothing.

My mind risen into self awareness.

Then rising further into the first fragments of awareness of what lies beyond self.

I looked outside mind, into flesh, into earth, into elemental existence.

The pitch perfect quiet surrounded my ears, a silence punctuated only by the gentle washing of the air through my nostrils as I allowed my body to breathe. I let myself view each breath, feeling the rise and fall of my lungs pressing against my ribs and witnessing the peace in which air passed my relaxed throat. In those moments of awakening, my breath is at its clearest. It sounds in my mind as if a string quartet had somehow found a perfect chord unwritten by composers who could dream such musicality but, unable to sound out the dream, were tempted to despair by the way the music of the gods could never be sung.

As awareness continued to return, I listened.

I listened, leaned into the quiet, into the near perfect and empty stillness, into the cacophony of the voiceless, the overwhelming vibrancy of a piano long after the last note has been played and the last pianist has died. I listened. And I heard it clearly.

Outside of myself: nothing, trickling through me as unbroken stream.

I had experienced such perfect quiet once before. Deep in a cave, where the constant stream – no, raging river – of noise above ground cannot penetrate. That time, timeless in silence, was my freedom. I had sought it out purposefully. I would never have made it through the burning had I not found that place and remained suspended in the dark for as long as it took. In that space I learned control. I learned how to channel pieces of the dark, the silence into the world above. After my exile, I could survive and continue my growth. Just about.

This too, as I woke, was the peace of the free born, as if the air itself had been sucked dry of its natural ability to carry a single decibel from source to ear.


I began to wonder why. And then forced back my wondering. It didn't matter why. Not right then. What mattered was that here was peace. Just a few more seconds of waking solitude before, inevitably, I would be joined by a million uncontrollable voices each wanting to have their say in the wind and the rain, in the stars and the sun, in the electrical hum and vibration of the lights, in just the over-abundance of the background noise – the hissing, jeering, broken cheering, the birdsong, the jet planes, the piercing screams of the artificial satellites.

A few more seconds. Breathe the peace. And know myself. Breathe. Then wonder. Then panic. Then fight. That's the order.

I let thoughts go. Postponing wakefulness. It was overrated anyway.

My body, in rebellion. Form must have life. Commanding life.

As I allowed myself to wake further, I watched and saw the air passing my nostrils. I felt each moment, a fraction of time, almost feeling each molecule in turn, the edges of nitrogen and oxygen and the way the bonds between their atoms sparkled, the jaggedness of carbon dioxide and the way sparks flew whenever it hit my flesh. I saw the space between molecules and in those dark places – although dark is a poor metaphor – I could sense the edges of something darker, just out of reach of my appreciation.

The air was cold, so cold. Far from the cool comfort of the cave. Coldness. A frigidity that could almost freeze the moisture of my nose, as if with each out-breath fresh ice would form on each nasal hair were it not for the warmth of my blood warming each follicle from below. Christ, so damn cold it might have been better to have remained unaware.

Unnatural. Again.

I allowed myself to enter into the touch of the air on my face. Unmoving, except below my nose where moved by breath. Yet it seemed to have its own life, the dead coldness tap tapping on my skin, hitting me with a gentle ferocity, calling each nerve and pore to join it on a frozen journey.

I let awareness of my body come into focus. I realised I was lying on my back. The ground, or floor, below pressed into my back and legs and head as gravity pushed me down. My weight felt right. In the unnatural, at least gravity was something familiar. Whatever I was lying on was soft, a blanket rather than a rock. It was flat. And it was warm, a sandy beach on a summer day. I could tell I was fully dressed but my hand and wrist lay against this ground. The sensation returned was pleasant, a cross between mown grass and silk. I allowed the nerves of my hand to carry this pleasure to my mind and for a while I lived just in that sensation.

I knew what I would see when I opened my eyes. There was no light on the other side of my eyelids. Just like the cave. I knew. I opened my eyes anyway. And gazed into black. I watched the colours for a while, created by my eyes and by the creativity of a brain striving for stimulation. Meaningless patterns, except for the meanings I would give them in my dreams.

And then I stretched my body out. Luxuriously on the soft grass-silk.

At least, that's what my mind told my body to do.

It wouldn't obey.

It wouldn't stretch or cooperate in enjoying the softness.

I focused harder, placed more effort into the command. Telling my hand to move, to experiment with the sensation.

Nothing. Nothing at all. My mind was strong. My body aware. But without movement I could know no more.

Unnatural. Again.

I waited in the silence. Watched my breath. Watched the molecules move. Listened to my heart beat and wondered at the way my body drowned out the outer quiet. I waited. What else could I do? I would have loved to be moving. To get up and feel my way round my surroundings. I like silence. I crave it. But choosing it is one thing. Having it imposed is another. If I could, I would have been searching for a way back to the noise, the fire and sonic booms of the world.

Instead, I could only wait.  Watch.  And remember.

Thursday, 11 August 2016

Days Of Gratitude - A Scribble, A Space Station, A Poem, And A Rare Meal

And so the year continues.

These are another four days on which I could have listed the problems and difficulties of being me.  Even the day I mark down as a "very good mental capabilities day" was still a lot of effort.  I was so proud of myself and very grateful too.  I can cook.  It's just that most of the time I can't cook.   I have the ability and practical knowledge to be able to knock together a few ingredients and whack up the flavour with harissa and paprika and whatever else is to hand.  But the day below was a rarity.  The DWP guidelines for assessment talk about whether a person is able to prepare a meal from fresh ingredients.  For the guidelines, heating up a ready meal or a tin of beans does not count.  But when I was assessed and even as my application for PIP has gone through the mandatory reconsideration, it seems that they haven't followed the rules.  And because I'm not emaciated they judge that I have no food problems.  Yeah, I'm not emaciated.  Because I eat a whole load of crap.  Ready meals and junk food and a shit load of sugar and fat.  I'm not emaciated.  It's true.  But that's not because I don't have any problems with food.  It's because I DO have problems with food.

I was so pleased this day.  I cooked a meal.  I managed to buy ingredients.  And those ingredients didn't all go in the bin having gone mouldy.

Unfortunately I bought quite a lot of ingredients that day.  Good quality ingredients - including really good organic produce from the farmers' market that happened to be in progress when I was retreating to the Metro to get home.  And I haven't managed to cook a meal from fresh ingredients in the six days since that one.  I suspect that the excellent food will end up in the bin.

That makes me sad.  The way I have been with food for a long time makes me sad.  Sometimes I have phases when I can cook regularly and while the food isn't going to get me through an audition for Masterchef, it tastes good.  It's simple.  It's not very varied.  But it tastes good.  I have those phases.  But the last one was two years ago.

Things are worse at the moment than they were.  I am now on stronger medication to deal with my anxiety - the daily panic attacks, meltdowns and shut downs were getting far too much and sometimes were getting to be a danger to my well being and safety.  So I have the medication and it's really helping a lot.  It has side effects though.  One of those listed is weight gain - one in ten people who use it experience significant weight gain through treatment.  I seem to be one of those people which doesn't surprise me because I'm good at side effects.

Now, if I had no food issues that would be fine.  I'd just cut down and sort out different things to cook and I'd be able to adjust and not put on the weight.  But I do have food issues.

Pretty much there is this:

On a bad day I don't have the mental energy or wellbeing to deal with much at all and I still do my best and try to do as much as I can.

On a good day I have more mental energy but it all goes on dealing with life and I haven't got anything left to be able to sort out my eating or my cooking.

On August 5th, one day in six months, I had even more mental energy and could cook a decent meal, one that was very healthy indeed and which tasted better than any of the ready meals and any of the junk that I usually have to eat.

That's my life with food.

The DWP say that I don't have problems.  Well fuck the DWP.  I have problems.  Every single sodding day.  Every single day.

August 5th was also an amazingly good day in another respect.  I found the mental energy to get the form filled out to officially appeal their judgement about PIP.  Yay!  I did it.  On time.  Yay!  Now I have to wait until that's all processed and then I'll be called to a tribunal.  The thought is not an easy one.  The initial assessment sent me a bit crazy for weeks.  It affected me very badly.  And now there is a tribunal to look forward to.

Here's an idea of just how screwed the DWP assessment for PIP is.  The woman informed me directly that you can live on two biscuits a day.  Did she really believe that?  If she did she is an idiot, totally unqualified to make a judgment on anybody.  If she didn't then she should be sacked for dishonesty.

Anyway.  Four days of gratitude.  Starting with the best mental wellbeing day I've had in a LONG while.

5th August

A food post.

Grateful that I cooked a proper meal.

I. Cooked. A. Meal.

That is a very big thing for me. It's the first time I have managed to combine actual ingredients into a meal in quite a lot of months.

Yes. It's been a very very good mental capabilities day.

6th August

After doing so well on Friday, the day was a massive contrast. I could do very little at all during the day. All plans scrapped. But:

Grateful to have started reading a book and to be enjoying it. And grateful to discover that there are three more in the series. They will probably cost more than the first which was in a shop selling seven paperbacks for a pound.

 Grateful to have spent a little time outside our back door in the evening with Kit. We startled foxes and talked of the present and the past - including that time they were mentioned on Radio 3 during the interval of the Horrible Histories Prom Concert when they were sitting at the organ in the Albert Hall with the organist and music arranger for the concert. Yep. That happened.

And we watched as the sky grew darker and the stars began to appear. And then a much brighter light appeared at 9.51 and crossed the sky.

Grateful because last night was the first time I have ever randomly seen the International Space Station. I don't think I've ever intentionally seen it. This, of course, is not a photo taken that night.

7th August

Grateful for Blob Thing and the way he encourages me to write at least something each day. I think his blog post was probably his strangest yet!

Grateful that I forced myself to go out for at least a while, to the not-church. An activity involved drawing round our hands while praying. Or not praying - instead thinking love of people or consciously letting go of situations and burdens, part of the walk into freedom. (Okay, so I did that even if it wasn't officially the activity.) Here's my hand scribble thing.

Grateful to have been encouraged before bed to try to art the thing in my head. Terrifying! A totally different thing happened, more suited to my zero art skills. With a few words. I can word a bit!

8th August

Dragged myself into town!

 Grateful for buying too many books I don't need from Oxfam.

Grateful for a drink in the cathedral cafe. At one point a Viking was there.

And grateful for the friendly faces I found in the building. I am posting too many here. There are many more and a blog will happen eventually.