Thursday, 29 September 2016

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 20th

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.

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