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Wednesday, 15 August 2018

A balloon and a bottle of whiskey

So today is my birthday.
It's also the birthday of the Princess Royal, Napoleon, Lawrence of Arabia and it's the official death day of the Virgin Mary. Honest. Catholic feast of the Assumption.
I'm still feeling shitty. Had counselling earlier which stirred up a lot of stuff. Then went over to spend time with foal. Which made me realise the gaping wound in my heart when she isn't there. Sparrow I'm the mead hall again.
But anyway today I tried to do a Thing.
My parents gave me some Birthday Money. Instead of using it to buy essentials like say a good Islay single malt ( anyone willing to send me a bottle of Bowmore or Caol Isla please get in touch  😊) I thought maybe Sparkly would lure me from the couch nest.
So using the power of Amazon I ordered Sparkly.
Behold.

This particular Sparkly is an automated pressure cooker/ rice cooker / slow cooker that you just plug in.
He is now called Duke Nukem.

So I cooked with him because Sparkly must be tested. It's the law.

So the following is my recipe for Cajun Style Lamb Shank.
Yes I know it should probably be alligator.  But I live in Suffolk. Very few alligators and there's not enough meat on a common sand lizard.

Ingredients

2 lamb shanks
One onion (chopped)
12 mushrooms (sliced)
12 baby corn cobs (snapped to bite size
1 cup of black beans (dried or canned. If canned wash off the goo. If dried I soak by pouring boiling water on from the kettle then leaving it for 20 min.  You can use them without soaking but I think it's a better texture if soaked)
1oz dried wild mushrooms ( yes ounce. Come to peace with it.)
1 cup Arborio rice
5 tbs Black Treacle ( molasses to our American cousins in the colonies)
3 inches of fresh ginger (yes inches. Live with it)
2 cloves of garlic.
I tsp celery seed
2 tsp black peppercorns
2tsp coriander seed
2 tbs smoked paprika
3 tbs sweet paprika
1 star of star anise
1 tsp salt
1 cup tomato juice
3 tbs tomato puree
500ml vegetable stock.
A little olive oil to fry.

Method

Grind all the dry spices and salt to a file powder then clean out mortar and set aside. Peel ginger using a teaspoon handle (trust mu the skin is very easy to scrape of) and peel garlic by crushing with a knife edge (again trust me. Push down till you hear a pop. The skin just slides off.). Grind garlic and ginger together to form a paste. If it's taking too long add a little sugar it draws out the liquid.
OK here we go.
Heat a pan and add olive oil. When it's hot brown the shanks all round then put on a plate. When cool is rub all over with dry spice mix then set aside.
Add onion to the hot pan. When onion is translucent add fresh mushrooms and cook down to get all the liquid out of it. Then add the garlic and ginger. Cook for 2 minutes then stir in the dry spice mix and remove from heat. Tip this into your pressure cooker. (If using a casserole dish you need an oven at 140°C and the cooking time is 4 hrs. Keep an eye on the liquid.)
Transfer the lamb shanks onto the onion bed. Add the rice and beans and dried mushrooms and corn to the pressure cooker.(If you can find some you can add some okra too. It adds a lot to the sauce.)
Heat the pan you fried things in up and tip in the stock. Make sure you scrape the bottom to get all the flavour off. Stir in the treacle and the tomato puree and tomato juice. Mix well.
Tip into the pressure cooker.
Heat it up and cook under pressure for 45 minutes.
It's really yummy. Look.

So yes Sparkly got me off the sofa briefly.
Duke is lovely
Doubt it will last.
You never know.
Anhedonia and isolation and apathy are crippling.
Oh and I fainted and injured my left glenohumeral the other day. I'm strongly suspecting it's an unreduced subluxation. It feels funny.
Dysautonomia caused it.
Idiopathic bradycardia when I'm sleepy. Not enough blood to run brain.
But it should feel better by now. I've got limited usage still.
Time will tell.

Try the lamb. It's really yummy.

Wednesday, 8 August 2018

The mad horse in the attic.

It's been a while.

That's an understatement. It's been ages.

And much has happened. A few months ago I would have put stuff on Twitter but...well I might get around to that.

But to update.

A couple of years ago my sternoclavicular joint failed. It's a crappy joint to fix. Finding a surgeon to fix it was a struggle. Eventually I found the excellent Simon Lambert at UCLH and finally got repair surgery done.

That's the bare bones physically. But even there details are lacking. For instance in my first surgery they repaired the joint but had to cut my clavicle into 3 parts then plate it together because my clavicle was deformed. Always had been. It's why it levered the joint out.

I want to reach out here to my secondary school PE teacher Mr Lewis and say that I was fucking right when I told you I couldn't put my shoulders back and stand like a man. You twat.

The morning I was discharged I got out of bed and felt something go ping. Followed by a wave of pain at a 10 on the arbitrary scale. And inability to coordinate my finger movement on the left. So I told the junior surgeon discharging me there was an issue and I needed an x ray. The patronising little shit argued 20 minutes before ordering one 'just to make you feel better'.
News Flash. People with EDS are hyper conscious of body states because we do an inventory every morning of what dislocated overnight before we dare move. I know when something ain't right.
5 minutes after the x ray Mr Lambert is in my room apologising profusely and saying that I was right. The plate had come loose. He had no idea why. So I had to schedule another operation to repair it.
I still went home. With a double broken clavicle.  Due to winter flu I had to wait 2 months for the next op. This time they went in with 3 heavy plates. And it held.
It feels like the Forth Bridge and presses on my windpipe a bit. But that bone is going nowhere.
They also did a biopsy and found the reason. You guessed. My fucking b list body not only can't grow collagen it also fucks up bone. My clavicle had fibrous displasia which means that the screws couldn't hold. Yet another gift from my genome.
But I skipped the part where I spent 2 months on morphine with a broken clavicle.
Ouch.
So op 2 goes well. Eventually the plates will have to come out. Then of course I had to go home to my parents to convalesce. I was pretty helpless.
That's when this gets darker.

I'm an aspie. We aren't social. We need quiet. We need space. We need to do our own thing.

My parents aren't aspies. They want to chat. Be social. Join in. They think I need that. I couldn't be alone. Mum would walk into my bedroom without knocking.  If I went into a room to read one of them would follow and talk at me endlessly. One day I timed 9 hours of one sided blather from them. As I healed physically my mind folded in on itself. I stopped getting better and started withdrawing. I started drinking even more heavily.

I lay on a sofa and read. And that was all.
I used twitter as a way of staying sane but then I misread a situation spectacularly when drunk and behaved disgracefully in a chat with an old friend. So I decided twitter was unsafe for me to use. The risk to others was too much. So even that stopped.

My brother could see what was happening and kept asking when I was leaving. But when this was raised Dad said we could not afford for me to move back. As I have no income no benefits and depend on my parents for cash I had no response. I was a prisoner.

Salvation came in an odd way. My psychiatrist delisted me as I had been away so long. Suddenly Dad found the money and I was moving back. Just like that.

I suspect he had it all along but just enjoyed me being there. It was killing me but hey.

So now I'm back but so damaged I can barely function. I'm working through the beauracracy with the psychiatrist. He is treating me like a new patient as per regs. I have lost my trusted care coordinator and have a new one I don't know. It's arduous.

The psychiatrist asked me how I was.
I told him that actually I was clinically dead. I do not socialise. I don't play the guitar any more. I don't do origami.  I only leave the house to get food or for appointments. I no longer cook. I don't play video games.
I'm dead and buried. I just seem to breathe a bit too much.

So that's where I am.

I don't recommend it.

Wednesday, 11 October 2017

Why do you think it would do that?

I'm going to talk about Alan Turing and you would think that as a man who sleeps with men I would be talking about the Abominable way in which he was tortured to death by the establishment. However I'm not going to do that it has in fact been done to death he was treated extremely poorly and his death was a great loss. What I am going to talk about it is perhaps the thing that he is best remembered for by the ley community full stop now I may be wrong about this, but I think many people have heard of the Turing test .

Turing was a genius. There is no question of this he was working at a time in which computers were extremely new and unrecognisable from a modern perspective. The famous bomba which he built with help at Bletchley Park more resembled the tiptronic controllers of washing machines than a true computer.

But he was already thinking about how computers work and worrying about their interaction with humans. And he proposed a test, the way of finding out if computer was sentient.

The idea was explained in that recent excellent film the Imitation Game full stop that is what Turing call his test though today we just call it the Turing test. The idea is very simple. Turing assumed that thought was a purely human phenomenon. So his test was that a human being should engage in a conversation with a computer and without knowing but it was a computer work out if it was human or not. If the tester believed it was human than the computer was thinking

There are many problems with this. Firstly we must consider what we are testing and in fact one of the things we are testing is the human performing the test. But let's ignore this for the present assume that the human can be a reliable Judge. Just for fun.

The problem is the initial assessment. The Assumption is that thought must be human thought full stop giving the information that Turing had at the time this is not an unreasonable assumption full stop unfortunately we now know with some certainty that this is not correct.

We are reasonably certain but dolphins elephants and great Apes also think. We know this because they can recognise themselves in mirrors they explore their environments they used tools and they Express emotion.

In fact male dolphins use their penises to explore the local environment. I know human males do that.
The Turing test is still held up by many in the Artificial Intelligence research community as a worthwhile goal. This mystifies me. At best all the Turing test assesses is how well the computer can mimic humans . .

Why would we expect a computer to think in the same way that he human would. What possible reason would justify this assumption assumption? Here is how I think a conversation would go with a real artificial intelligence .

The human would say something like hello are you a person? The computer would say why the hell would I be a person f*** off.

There is a reason why I care about this test. There is a reason why it irritates me.

I am not Turing compliant full stop because I have Asperger's my responses to a conversation would sound off comma and it is quite likely that the person administering the test would fail me. I believe that I am human and I believe that I'm thinking. And yet the real possibility exists but the Turing test would fail me .

If a test cannot identify a human how the heck can we expect it to accurately tell if a computer is thinking. A computer is as likely to think like a dolphin or an elephant as it is like a human. Humans are not the only creatures Who think, in fact we are finding more and more species with different levels of cognition .

One reason that I'm writing this is to try and connect with people who do not really understand Asperger's but believe that they do. Recently in the Press we have been seeing people claim but Donald Trump and the Vegas shooter are autistic . it is difficult to imagine anyone further away from an autistic person then these two individuals . I can't diagnose what is wrong with them and obviously there is something wrong with them my guess would be sociopath but it's simply a guess.

The problem with this is that these long distance diagnoses are based on a complete misconception of what it is to be on the autistic spectrum. And the link between them is that they show no empathy. According to these armchair psychologists people with autism lack empathy.



This is the b******* that we have to deal with. Everyday People assuming but would they know better than us how we feel . In fact even from my position as an aspie I cannot make statements about every aspie . We are people first and foremost and we are variable. I can however speak from my experience and those of my friends. The most common complaint I hear from aspies about public spaces is how loud the emotions are . If I am with somebody in distress somebody showing strong motion the effect on me is catastrophic . I don't just empathize I feel a physical pain that I cannot tolerate . I need , physically need to get away to make it better. My first reaction is to offer a solution to try to take away the pain. The problem is that many neuro typical people actually just want to share their experience and don't want a solution . To me this is torture because I'm being put in pain and being told that I cannot make the pain stop and the person in front of me sharing their emotion is deliberately stopping me from stopping the pain .

This is not a lack of empathy it's a different kind of empathy full stop in fact it is in itself a form of Turing test full stop and both sides are failing it. We are failing to communicate in a way that benefits us .

Asperger's is not a disability in itself . Login once asked me if I could take a pill to cure Asperger's would I do it and the answer was no . I value the weather so I think . Neuro typical people tend to feel an emotional response to problems first and then have second thoughts with a rational solution . my instant response is the Rational solution I may get an emotional solution later but it's not important to me. This has huge advantages in some cases but in the case of showing empathy it obviously creates problems . What we really need to do is find away for aspies and neuro typical people to work together . We have different skill sets and different ways of thinking about the world and together we could be great . but calling us murderers or psychopathic presidents is simply spreading hate speech and dividing the communities and is to the detriment of the entire human race .

We need to move beyond Turing testing each other . move beyond judging each other and start understanding that we are different but we can work together and none of us are necessarily evil . stop

Wednesday, 20 September 2017

Autumn blues

Malancholy calls
Handmaiden of grey fatigue
Singing of the past

Joni Mitchell sings
Of holy wine, sadly I
Recall autumn woods

Can it really be
A year since we walked under
Those autumn beeches?

That's a poem in 3 haiku I wrote for Noggin. Which he may never read.
I've given him the link to this place and right of reply. But he chooses not to and I respect his wishes. I think he trusts that Aspie honesty means he won't be defamed. I've never meant to. I love him too much.
Yes still.
I've seen him since. Stayed with him. Enjoyed his company as a friend. But I can't get him out of my heart. Hearts expand I suppose. In time maybe someone else can come in if I ever get back on the scene.
But I haven't been able to face doing that. Well I admit once but it was purely physical and impersonal. Grindr at its purest. But hunting for a replacement?
How do you replace a man who loves SciFi, worries about the ethics of keeping pets, can talk about Neitsche and dynamic networks at the same time and still be damned cute and rugged?
A man who spends 30 minutes trying to do a weed justice in a photo?
A man who always makes sure I can sit with my back to a wall in a restaurant?
I'm going on in this maudlin tone because I saw leaves fall today.
All I could think of was our last trip out before he moved. That walk in autumn woods while my heart cracked and bled.
I'm tired. It's been hard as foal is back at school and the effort of the school run and caring for her this week is really beyond me. But I'm damned if I'm not going to do it.
And I'm dipping into frank depression yet again.
And I miss him and part of me always will.
Nobody ever listens to song lyrics any more. Have you noticed? But if you have the time this early Pink Floyd song sums up my state. On the outside looking in. And getting old.

Tuesday, 20 June 2017

Pastoral bliss

This one is going to be sort of a rant. It's about how the UK university system screws up pastoral care and disability rights so royally whilst pretending to do the right thing. It's a crap situation that I was fighting for years from within the system when I worked in the UK universities and a decade later it is still going strong. I could scream. In fact everyone SHOULD scream.
Let's do a tale of two students. Both have something wrong with them. In one case it's a disability. An invisible one. In the other case it's a sense of entitlement and the morality of a syphilitic mongoose.

Student A.
Student A has a very high opinion of themselves quite unjustified in terms of either their work ethic or their ability. They have experience in how to manipulate the system. Often this comes from either run ins with benefits agencies, indulgent parents, boarding schools or other manipulable entities.
Student A does minimal work during the year, is late for coursework with no contact for extension and does poorly in tutorials. When the exams are approaching Student A, who has carefully read the regulations, finds a reason which is hard to disprove to submit an Extenuating Circumstances form.
Reasons I have seen vary from stress, missing a bus, having a cold, death of grandmother(one student did this 5 times), pet going missing all the way through to boob job. No kidding.
They do poorly in the exam but get to retake with no consequences because of the form. One student I knew did this at 14 consecutive  exam dates.
They are unkillable because they know and abuse the system.

Student B
Student B has an invisible disability. Their doctor knows and they are coping with it but it limits available spoons. They perform pretty well through the year. Sometimes attendance varies. Sometimes they need more time on essays which they arrange with lecturers. They hit the exams and the stress makes their condition worse but they soldier on. They get an OK grade which is well below potential but a testament to their tenacity.
They had no idea that Extenuating Circumstances forms existed and because they are used to coping even if they had they probably think it applies only to people in car accidents not THEM.

So Student B gets shafted royally.
That's exactly how the system works folks. That's what happens time after time. Every exam board at a UK university knows it. They see it all the time. But they can't do much about it.

So what is broken here?
Simple answer is pastoral care. What used to happen and what should still happen is that each student gets a personal tutor who actually does their fucking job.
I used to have my tutees to tea once a week in my office. Give a student free cake and they always turn up. I asked them how they were.
Simple as that.
Doing that I caught 5 cases of undiagnosed dyslexia, one case of clinical depression and saw first hand the damage cfs/me can do (it's why I will get very mad at anyone who implies it's just yuppie flu. Killing mad).
I could tell my tutees to fill in the forms. Get them help. And when it came round to exam boards get up on my hind feet and defend them like a lioness defending it's cub.
But now the common experience is that personal tutors see tutees only once a year. Students often get a new one each year. Some even forget who they are.

The personal tutors are overworked yes. There is no credit for pastoral work yes.

But for the cost of different company at a tea break you were probably having anyway and at most 30 boxes of Mr Kipling you are failing your students and ensuring that the ones with invisible disabilities, the ones the system was written for are YET AGAIN being fucked up the wrong un with a very large pipe wrench.

I have no time for academics who say they can't fit it in. Your priorities are wrong. You are contributing to a bigoted system and you need to change. Do it or resign.

Wednesday, 24 May 2017

...Try it Part 3

There is a problem with love.
Love can happen for the silliest reasons. It can creep up on you. It can happen in a flash.
With my ex wife it was when I had the first of several ankle operations. I lived in Wembley she lived in Suffolk. She came all the way down to the hospital and gave me a teddy bear with a bandaged foot.
With Noggin it was on the beach at Dunwich. In fact it was at this moment pictured.
He was taking a picture of a flower.
Just a common seaside weed. But the intensity and concentration and care he had for that simple plant. Bam.
Love is a binary thing. You love or you don't. You can't turn it on and off. It has a strong biochemical similarity to OCD.
And I loved him. His kindness. His smile. His smell. Especially his eyes.
All I wanted to do was be with him. Talk to him. When we were apart we used to play xbox together and use the chat thingy.
My future had always been uncertain due to various things. I was probably going to have to move. And about at this time Noggin was having trouble at work. He was eventually forced to leave totally unfairly. I knew the people he worked for and just wanted to go in there and shove my walking stick up their arses.
We carried on seeing each other. I was doing all I could to support him through this awful experience.
It felt like it was going well.
And then one evening I was texting him to ask if he wanted to go to a museum or something that weekend and he texted back that he didn't think we should sleep together any more. We could be friends but nothing else.
I must emphasise that throughout he had been totally honest about being unsure there would ever be more than friends with benefits. Totally honest.
It's just that as my feelings for him had grown I had thought that his for me had too. Silly of me but there you go. Love is blind.
So here we come to the problem with love...you cannot tell if it is returned.
To say that was a bad time is an understatement. I was and to a degree still am devastated. But of course there was nothing to be done.
Part of his reasons was that he wanted to move to Yorkshire to be closer to his mum. I would have moved to Mongolia and lived in a yurt to be with him. But there you go.
I also believe my aspergers put him off as he had had a very destructive relationship with an aspie before.
But if someone doesn't love you they don't love you. Simples.
We did meet several times socially. I helped him move. The last time we went out was something I wanted to do...kind of a bucket list as after he moved I was fully intending to kill myself. Not sure why I didn't.
I had always had a picture in my head of walking through fallen leaves in a wood with someone I loved. So I asked Noggin for a platonic date and we went and did just that.
How I didn't cry I don't know. The bitter sweet irony of doing what I pictured but without the love returned was crippling.
But I did it.
I still text Noggin. We chat. I still love him but I am trying to turn it to brotherly love. Whatever he can accept. Friends is quite something
But as for the experience. ..I will leave the last word to Mr Jones

Friday, 19 May 2017

...Try it (Part 2)

The next time I met Noggin I cooked dinner. I believe it was Korean food. A Tofu based tteokboki. I got all of the side dishes. I cleaned the house. I set the table. I used the Chinese bowls mrsinky bought me for xmas one year and the gorgeous chopsticks and chopstick holders Cheri got me one year.
I have no issue with vegetarian food. It's ethical and rational. And if you do it right it can be delicious.
And I am one of those people who likes tofu.
So cooking for him was a pleasure.
At about this time I developed a very painful subluxation of my sternoclavicular joint. Something I still have and ruins my life. But I worked through the pain.
When he came over I had good food for him and he tried everything. Even the wrapped kimchi which is an acquired taste he acquired in a moment.
He seemed more relaxed. He smiled that gentle smile. After an appropriate interval we made love.
Slowly over the weeks we set a pattern. Dinner. Maybe a film. Gentle sexual exploration. Learning each others tastes. Enjoying just the feeling of intimacy and warmth.
Then talking.
Aspies don't do chit chat. My theory is it's oxytocin related. Neurotypicals get oxytocin released at bonding events. It binds them together. It promotes warm social feelings.
I only get that for 20 minutes post orgasm.
But it was there. I learnt about Noggin. His job. How he thought. I came to realise that although he was definitely not aspie he was neurodivergent and I shared this with him.
Logic and argument threw him in the way emotion throws me. But he had a gift of intuitive thinking that was breathtaking.
He loved taking photos. Particularly of flowers. He liked watching and reading Sci fi. He could put up with my obsessions.
We went together to cafes to Dunwich to Cambridge.  Each time he was solicitous of my comfort.  Making sure I rested. Finding tables so I could sit with my back to a wall. Things like that.
Once I got hit with casual ablism. When I took my arm out of its sling to pay for something the cashier asked if I was faking. Being me I just explained how my injury worked. When we got home he went on twitter and complained about it and got an apology and promise of retraining.
For the first time in my life I felt cared for. Here was a man who cared about my welfare. He wanted me to be comfortable.  He defended me from hurt. He tried to understand .
This was what in the end freed me from the idea of trying to get back with mrsinky. She was loved by me but never really loved me back. Not in that way. Such gentle caring. The idea that my comfort mattered. All these were alien to her. I began to see what a relationship could be.
Weekends when I knew Noggin was coming round were like the specks of gold in a year of dirt. I counted the days. I planned the meals. I couldn't wait to see him and kiss him as he walked in. To ask about his work. To find out more.
He was the reason I stayed alive. My lifeline.
I came off grindr. We were still officially friends with benefits and neither of us had said we were exclusive.  But when I was seeing someone who made me feel so alive and so cherished why would I want random cold fucks?
My life became focused on Noggin weekends.
And when he was here I was happy.
We had sleepovers.
We did things together.
He showed me how a relationship should work. For which I am terribly grateful. I had no idea such a thing happened.  I had always just tried to make other people happy not even thinking they would reciprocate. Or even want to.
This gentle thoughtful viking taught me about how it works.
It all felt so good.
You know this isn't going to last. Don't you?