Days Of Gratitude - It Was The Average Of Times It Was The Worst of Times

That's a misleading title.

The average of times these days is pretty good.  But it certainly hasn't been the best of times and so I had to mangle the famous sentence by Dickens.  Is there a sentence by Dickens more famous? Perhaps we could shout out "Bah! Humbug!" if indeed Scrooge said that in the original story.  I am not going to read the works of Dickens and find out.  I confess to not finding his writing wildly exciting, which is why we no longer own our inherited set of his complete works.

The Pickwick Papers was quite fun for something that rambled so much.  And that story is tangentially related to my day.  For part of that story appeared on the back of the Bank of England ten pound note when Dickens appeared on the front.  I can't remember the story at all but know it included a cricket match at one point because of the design of our money.  That note was withdrawn in 2003 to be replaced by the note featuring Charles Darwin - and a hummingbird, which might be pretty but wasn't one of the birds which inspired Darwin in his work.

The Dickens note is long gone but there is a new and plastic five pound note and I received my first one this morning.  It doesn't feel like money and feels a strange sort of odd on my skin.  The transparent section is particularly weird.  And there's a picture of Churchill, a variable man.  Yes, his leadership helped British morale and contributed towards the allied victory in the Second World War.  But we mustn't forget his racism, and how strongly he defended the British Empire, sometimes at great cost to the inhabitants of what was the empire and sometimes at great cost elsewhere - from India to Palestine, Afghanistan to Iran.  So often he is held up as a saint, a man to be worshipped.  Words about him could come from a medieval hagiography telling myths about these supposedly near perfect saints of Christendom.

Anyway.  There he is on the five pound note and there he will remain until he, like Dickens, is removed from circulation.  And there he is on my five pound note.  I will not treasure this note.  It doesn't have a code staring AJ01 so is worth five pounds not fifty.  I will not mourn its loss like Paddington mourned at the thought of his note being burned.

To be honest my five pound note is uncomfortable to touch, especially on the side with the queen - who for some reason has dyed her hair and removed all her wrinkles for the purpose of the note.  I don't think it looks much like the queen at all.  And that feeling on the words "Bank of England" and across her crown.  Ugh!

Where was I?  Ah yes.  Some days in my life and finding things within them for gratitude.  These were tough days though.  One on which I struggled to go out and wrecked my head further.  And then two on which I couldn't leave the house at all.  And then a return to a head that feels better, a head that can smile, a head that can begin October on an even keel and be enthusiastic about the possibilities of wonderful things.

September 25^th

Grateful for smiling people before the Sunday Assembly

Grateful to have survived being out - and for self caring enough to leave SA and sit outside on a sofa after the first song - and just about been able to get myself home safely.

Grateful for quiet, and dark, and having a tidy room to retreat to.

Pretty horrible day after wrecking myself on Saturday. Much shaking. Many tears. And massively painful. I shouldn't have gone to SA. I wanted to, but shouldn't have gone. I should have returned home the moment being in the street near home hurt, or at least the moment the overscented man and woman got on the Metro at West Jesmond.

Grateful that crap days aren't all days. As a friend says, "There's no such word as never, and forever is a load of crap." She's wrong of course. There is such a word as never. In my dictionary it's between névé and new. The word after new is Newcastle disease.

Grateful that I just learned how to type é with an acute accent.

Picture is not connected to the day - it's from my parents' garden. I will never visit there again as we have a buyer for their house. Grateful that's happened quickly once we got it on the market. [Apologies to people with good memories who may remember this photo from another day.]

September 26^th

A rubbish head day. Very rubbish!

But grateful that I was able to not stay under the duvet all day.

I wrote an important letter, tidied properly and for a happy thing booked places at several events in this festival next month. I am looking forward to it all. 

September 27^th


A second day of not being able to leave the house and a particularly stunningly bad time.

Grateful though for learning something most people would have learned long ago:

My camera on the phone has some kind of zoom function.

One of these (with window reflection because I couldn't think of standing outside on the back step) becomes the other.

September 28^th


Grateful for an improved day.

Grateful that although it was difficult I was able to do jobs in Gosforth in the morning and fun things later - meeting a friend who had never been to Heaton Perk and then singing with the new choir.

Life is sometimes massively hard for my brain to do.

But life is good.

Pictures are of a 25p charity shop find and a dubious product for which the ingredients just say "mixture of herbs". I will try it!

September 29th

Grateful for lots of ticks on the job list.

For the clarinet, for sign posts, and for this magazine that they keep sending me for free. I don't agree with everything by any means but it is always interesting. And they are pacifists which is good. Homophobic and sexist at times, but pacifists!

Grateful too for the opportunity to return to Manchester tomorrow for some days.

Days Of Gratitude - A Confidence Boost, Two Choirs, And A Dinosaur Adventure

I think I can be proud of myself.  When I consider how things went on September 20th and then look at what I achieved on September 21st.  I've had bad days in the week since then - several bad days that are in part my own fault for pushing myself too hard to do something unwise.  In the space of a week I've had three days on which I couldn't get out and two days on which going out led to difficulties.

But the confidence boost mentioned still holds.  I am absolutely bright about the future and absolutely certain that I will be able to do more than I imagined.  I am also very pleased that I'm not basing this on an obsessive enthusiasm but on a bit of insight into how I function and how I dysfunction.

A while ago I was hoping to do something and it was something important to me.  But I pulled out because I didn't think I would be able to do any of it.  In part that was my mental health going through a bad phase.  In part it was panic at the thought of each aspect of it.  In part - Amanda thinks, probably correctly - it was demand avoidance.  No, I haven't got PDA but I can see similarities between that diagnosis and the way my head words.

What September 21st teaches me, alongside experiences in Edinburgh and a few other things recently, is that I can be involved with this project.  It's not my baby any more.  I passed it on to others.  But there is space for me to be involved.  It took everything in my mental power to even get to the first meeting of this project.  As the second meeting approaches I am firing not on all cylinders yet but on many of them and I know - yes, I know, that I can do a lot more than I thought.  I've just got to convince the world of this!

September 21^st



Grateful for the confidence boost in the morning when attending a training session about autism which I was in no way entitled to attend. Yep, I completely wasn't meant to be there! Photo was taken afterwards.

And grateful to just about still have the mental ability to get out later and sing. Looking forward to the next rehearsal if I can make it.  [yes, I could make it. It was last night and it was excellent.]

September 22^nd


Grateful to have got some jobs done, some of which have been waiting to be done for a long time. Part of my executive function skill problems means that things don't get done. It's not laziness. And it's not procrastination. I always thought it was. Grateful to have discovered that there's actually a reason why my brain is like it is. Grateful that discovery means that in time I can find realistic ways of dealing with it all and so function a lot better.

The photo represents electricity. One of the jobs was switching our energy supplier. I knew we weren't on the best tariff from our old supplier, the Cooperative. But I didn't know just how rubbish it was. The prediction is, if we use exactly the same amount of energy in the next year as the last year, switching will save us just over £700.

I am pleased. And also shocked to have been paying nearly £60 a month more than we needed. Every single day I delayed and wasn't up to doing the job cost us nearly £2. Blimey!

September 23^rd


Grateful to have got lots of jobs done including writing a pretty stonking follow up email from autism training on Wednesday.

Grateful to have gone and sung in the evening with people I've never sung with before. I don't know whether I will again but it was worth doing.

Also grateful that my mental health assessment went well and she is going to at least try to refer me somewhere that might be of some earthly use to me. CBT is NOT a possibility. Hoorah.

The photo is the only one taken in the day. It's not good! Jesmond in bad light on the way to the singing.








September 24^th


Grateful to have known that it was okay to leave something in the morning when I wasn't coping well.

Grateful that this left time to take Blob Thing and Winefride on an adventure.

They had a wonderful time and didn't get eaten.

And having completely mucked myself up later in the day, grateful for a decision about self care - assuming I can manage to stick to it for once.

Day Of Gratitude - The Writers' Cafe And A Whole Heap Of Honesty

I am proud of myself.

Because this was a very difficult day.  And yet I still managed to do some things and to do them well.  And even though it was so hard and my brain was not recovered I managed to do things the next day that surprised me and gave me real confidence boosts.  I was going to include all those good things in this post but they'll have to wait until the next post because this one came out differently to expectations.  I hadn't meant to write nearly 1000 words about a day.

Some days contain much that is dreadful.  But not all days.  And even the dreadful days contain much that is good and much to be grateful for - even past the mundane, taken for granted things like "I have a house, I have the ability to walk, I live in a country where I won't get thrown in prison for leaving my religion or for being queer, I have books, I have clothes, I am richer than most people on this planet, I have a ready supply of clean tap water."  Those are all big things and perhaps we all take them for granted too much because of their daily familiarity.

If I had focused differently and was part of the Sunday Assembly Honest Description Group then this difficult day would have read like this:

September 20th

I felt bad in the morning and due to sensory issues the journey into town was painful.  Nevertheless, I took part in the Writers' Cafe and am pleased with the results and was able to spend some time with people afterwards.  I am grateful for that and possibly came out with an idea that hasn't been written before.  By anyone.  Ever.  I didn't eat in the cafe with them though because I wasn't up to eating lunch just as I hadn't been able to eat any breakfast.  I was able to mask well through the morning and I am glad to have been able to do it but inside was hurting and being out in the street was too much, too loud, too bright, too smelly, too everything.  One of the bad days in which I have to work extra hard to get through.

Then I went to my electrolysis appointment.  Because of the extra sensory issues and because the anaesthetic cream was only applied 30 minutes before (as they recommend) rather than 50 minutes before (as I recommend) it hurt far more than usual.  Usually I find it very painful.  Today was excruciating as every nerve and every part of my brain was wired up for amplifying every input and giving it all to me at top volume.  Listening to distracting music and clutching a soft toy wasn't helping.

It's not just the pain.  It's the bright light shone at my face.  It's the sensation of being touched so much and in such a way.  The whole experience is awful for me even on the best of days when I manage to get through the appointment without collapse.

I struggled through the appointment determined to get through to the end.  I pressed my right hand into my left hand hard and as it got worse dug my nails in repeatedly.  As a result my left hand is bruised and has blood marks from my nails.  I tried so hard to get through my appointment.

I failed.  Instead my whole body went into some weird spasm.  The person doing the treatment asked if I wanted or needed to stop.  She's nice.  I wasn't able to speak but managed to nod.  So we stopped.  I couldn't speak.  I couldn't move my body.  She asked if I needed time.  I managed to nod again and she left me alone.

Slowly I was able to move again and managed to sit up.  I looked at my arm and wanted to cry.  I wanted to cry anyway because I hadn't managed to get through the appointment.  I tried to tell myself that I am not useless or a failure but at that moment my head wasn't accepting reason.  My face hurt.  But everything else hurt more.

I managed to get myself going and was able to leave the clinic.  I can't remember whether I made another appointment.  I will have to check that out.  It's a period of time my head is now choosing not to remember in detail because then it would take me back there in full technicolor glory and present the hyper-sensory medley to me once more.  Sometimes it's good to forget.

I was now on the street in central Newcastle.  I knew that I would be unable to get myself home.  In my current state it would be impossible.  I also knew that that street was too hard to deal with and that I needed a quieter place, close by, and somewhere familiar.  There may have been unfamiliar quiet places close by but at the top of the hill, maybe 100 metres away, there is Waterstones.  There are some comfy chairs in there, it's relatively quiet, and they don't play music at you.  Somehow I got there.

I found a chair.  Sat down.  And went more into shut down.  Unreactive.  Unresponsive.  I couldn't do a thing.  My brain continued to churn but I couldn't act.  But a comfy chair in Waterstones beats the noise of the city street.  It's a nice city.  I love it.  But not on this day.

My brain kept going and eventually I was able to come up with a solution and was able to put it into practice.  I texted Beth who would be finishing work at 4.30 and passing close by to Waterstones on her way home.  By that time it was nearly 4.30 anyway.  I wrote "in waterstones   come get".  And I waited.

She arrived and held me for a bit.  I couldn't speak.  She led the way and took me to buy food for dinner because I still hadn't managed to eat.  And then she took me to the bus stop because I couldn't manage the underground Metro platform even with help.  I was able to talk with her a little on the bus and even at the bus stop.  But not vocally.  I had to use a text to speech application on my phone.

So, some gratitude.

I am allowed to stop appointments early.  Nobody is mad with me.  With help - absolutely necessary help - I got home safely.  With help, with safety, I was able to speak again.  With help I was able to find food and find the encouragement to eat it.  Without that help I would have been at great risk.  I expect though that had I still been in Waterstones at closing time - if I hadn't been spotted sooner - someone would have helped me.  There would have been a solution found for me.  If I hadn't got to the shop and remained on the street I would have ended up at grave risk.  Grateful to have been able to get inside.


That's what I could have written.  Instead I wrote this short entry:

September 20^th


The second half of the day was awful. Some of the worst bits of being autistic. Pretty crap.

So. Focus on the morning.

Grateful for the Writers' Cafe. I wrote some words that may be worth playing with. A lot. And adding to and building on. A lot. This is a happy thing.

For My Favourite Uncle And For All The Happy Times Spent With Him

On Friday it is the funeral of my favourite uncle. I can't be there but I am thinking of his widow and children a lot, and thinking of him too.

This is a photo from 1983 and my mother was amazed at this technological scenario. She captioned it "3 computers in one room!"

 

 

In the foreground from left to right there is me, my cousin - son of favourite uncle, and my brother. We have Sinclair Spectrums. In the background my favourite uncle sits with his Acorn computer.

I remember on that day that my uncle challenged each of us to write a program called "Traffic Lights."

It was a great day, like so many others we spent with him, his wife - my favourite aunt, and their children.

I thought of this photo when visiting the South recently because my brother and I visited them. It was very good to see my aunt and her children. But my uncle was missing.

 

 

The garden where we shared so many times and so many games.  

 

The garden from which we have eaten so much home grown food.

 

 

 

 

 

 

 

 

We enjoyed good family conversation.  But he was missing.

There's Blob Thing engaged in conversation with the cat.  I am not sure what Blob said to make the cat wear that expression.

 

 

 

 

 

 

 

We walked on paths and roads we have walked many times as an extended family.  But he was missing.

 

We visited the museum he had poured so much love and enthusiasm into.  But he was missing.

 

 

And, like so many times before, we ate great food.  But he was missing.

His death was sudden, a few days before. A big shock to everyone. He's going to be greatly missed by family, friends, and the whole community of the place where he lived. His blogs will be greatly missed too by those people across the world who read them.

 

Why did I think of the three computers photo?  Because at one point five of us were sitting in that same room with laptops in use.  Another laptop sat open on a table.

 

Yes, SIX computers in one room.

 

And that doesn't count the mobile phones we all had close to hand each of which are far more powerful than a Sinclair Spectrum.

 

Times have changed.  But I confess that I now lack any knowledge to program any of the computers with even the simplest program called Traffic Lights.

Times have changed.  This is a photograph taken a little over three years ago when we visited Avebury Manor.

My parents are seated.  From left to right standing are my child, me, my uncle and my aunt.  My dad was already very noticeably ill but that day was an excellent one, full of smiles and laughter.  So many days with my uncle were full of smiles and laughter.  If I picture him in my mind he is smiling.

 

Another Avebury Manor photo.

 

 

Smiles.  Yes, we smiled for the camera.  But when visiting my uncle we all smiled.  And we enjoyed being with each other.  I will return to his home again and stay there with my aunt.  Maybe it'll be during a family gathering and I will see cousins too, and a half-aunt and half-uncle and all their spouses and children.  I had been half planning to get there next Summer anyway.  That plan still holds.

 

One final picture from that day three years ago.

This photo calls him king.  He truly was the king of uncles.  Anyone from my mother's side of the family who reads this will know that to be true.

 

Farewell uncle.  We lived far apart but I will miss you.  We will all miss you.

And on Friday I will find time to raise a glass to you and in your memory I will smile.

Days of Gratitude - The Near Paradise Of An Autistic Fringe Yurt

These were great days.  I feel I should warn regular readers of something.  Lots of the days since have been very difficult indeed as my lovely autistic brain has struggled with the whole idea of getting through things and has failed to do so at times.  Although in another sense it has succeeded because, after all, I am still here.  Last night was very difficult.  Today has been very difficult indeed.  So many tears.  So much shaking and yeah, it's generally been horrible.  I cancelled today.  I had things I wanted to do or needed to do and cancelled the lot.  Later I did manage to get a few things done - like prepare this post.  But self care involved pulling out of everything I had committed to.

But these days below were great.  It astounds me.  Today I couldn't leave the house.  Yesterday I couldn't leave the house.  But I spent three days in the unknown-to-me city of Edinburgh, wandering the streets, navigating my way around - including managing to find the Quaker Meeting House in order to meet strangers for a bit of Shape Note Singing.  I spent time among more strangers and people I've not met that much.  I coped with a pretty harmless but rather too friendly drunk woman and was deemed brave by one of the "names" of the autistic community.

I was quite amazed with how well I managed those days.  Yes, much of it was spent in autistic space with autistic people and that's easier to cope with than most things.  But it was all unknown.  And I am pretty proud of myself for how well I did.  It's the confidence boost I mentioned in the last post.  There's going to be another confidence boost in the next post too - it won't just be staggeringly crappy days.

So here we go.  Four days.  And a musical decision at the end.  I was playing it today.  Parts of the Mozart Clarinet Quintet.  Badly of course.  I am surprised to be playing it at all.  It was a horrible day in many ways.  But I played a clarinet.  And I played a guitar.

September 16^th


Grateful that I have coped today with day one at an autism conference in Edinburgh.

This is the Fringe Yurt, safe autistic space.

And a conference hall that by all rights I shouldn't have been in.

Grateful too to meet up with a friend I haven't seen for 20 years. She says it was totally obvious then that I am autistic. Took me a long time to work it out for myself!

September 17^th


Grateful to have been given this opportunity to be in Edinburgh at the Autistic Fringe and to have been able to sneak into the main Congress too.

It's been a bit like an unstructured mini Autscape. Being with part of my tribe for a few days.

The yurt was well lit in the evening.

September 18^th


Grateful for the yurt days and the autistic space. But grateful for my own bed.

The weekend was an amazing opportunity. Totally glad I went. Now I need to recover from the last couple of weeks.

 Grateful too for a morning walk in Edinburgh. Pretty.

 September 19^th


Grateful for a decision to pick this thing up for the first time in years and blow air through it.

There is a plan to blow lots of air and maybe make some nice sounds too.

But it's been a long time. The sounds are not currently as pleasing as once they were.