I don’t understand anymore

Perhaps fitting in isn’t the answer.

Perhaps it’s not even important.

Perhaps it never was.

So why worry about community ?.

Hey, I’m supposed to be part of one. The “Autistic Community”..whatever that actually means!

Calling myself Aspie is frowned upon because that, apparently, sets me up as some sort of “superior” being. Apparently I flaunt myself as being high functioning or intellectual or whatever term someone else chooses.

I can’t help my diagnosis.

And the puzzle piece. That’s been part of Autistic culture for a while. I like it but hey, what do ya know ? That’s not viewed as being pc because, and whisper it quietly, some people find it offensive.

I never quite understood that. To me it’s just representative of being part of the larger puzzle of human existence or a missing evolutionary piece (and I’m not saying that’s a “superior” piece by the way) and I found it fun. It’s on a couple of my t-shirts.

But I’m wrong.

I don’t think the community actually gets “it”. I think we are too stuck up our own arse, too self controlling, self policing, nit picking and yes, stupid, at times, to be taken seriously. We want NTs to take us seriously yet quibble over silly details.

I’m not better than anyone. I’m not superior. I’m not high functioning. Those are not my labels. I’m just me, ordinary, barely functioning, struggling to get through.

But yes, Aspie is me. Aspergers was and is my diagnosis. If you don’t like the term Aspie then don’t use it. I’ve said so before. Nobody is forcing you to are they ?. I don’t say you can’t call yourself Autistic, Autie or whatever term you choose no more than I tell someone who is gay they can’t use the term “queer”. What business is it of mine ?. Does is hurt me ?. Does it affect my everyday life ?. Not at all.

It’s called personal choice. It’s called free will.

And don’t use the puzzle piece if it offends your sensibilities. If somehow you think it demeans you or misrepresents you. Just don’t.

I’ve lost count of the blogs I’ve written about my concerns that this community is hell bent on harming itself by marginalising certain people within it; by picking petty fights and refusing to be what it claims to be, all encompassing. Our aim should be to come together but also allow ourselves to be individuals. We can share a common goal. In an army everyone has a rank. An army doesn’t consist of corporals or captains and our community should be able to cope with people describing themselves as Aspie, Autie, Autistic, Neurodivergent and other descriptors so long as those people are comfortable in their own description.

Perhaps I’m wrong.

Perhaps this is it.

Perhaps I really don’t understand and I’m so out of touch I should just form my own community of one.

I’m not sure I get “us”anymore….

Five reasons to visit :- Egypt

So, here we are. An occasional series in which I will give you five reasons to visit some of my favourite countries.

Starting with Egypt.

1. Egypt needs you.

Seriously. Egypt relies heavily on tourism. At one point as much as $12.5 billion went into Egypt’s economy through tourism and 12% of her workforce were employed in tourism facing jobs. That’s a lot of money and a lot of people.

From a peak of almost 15 million visitors the number has steadily declined due to safety concerns and now stands at around 8 million. Revenue has dropped below $6 billion.

This is huge for Egypt and whilst the Nile has been unaffected by the terrorist attacks that have plagued the Sinai peninsula, the rapid abandonment of the country by several prominent airlines and travel company’s has only made the problem worse.

2. Nile cruises are amazing

The perfect blend of sightseeing and relaxation!.

What is there not to enjoy ?. Floating hotel, all meals included, incredible sights and sites and perfect weather (for those who like it hot). The perfect combination. I’ve done two cruises and had a sensational time on both the shorter cruise between Luxor and Aswan and the 600 mile cruise from Aswan all the way into Cairo.

3. The largest open air museum in the world

Everywhere in Egypt you are surrounded by history. In fact, if you say you are a history buff and haven’t been to Egypt I question your use of the word “buff”.

There are just so many places to see. Cairo with the Pyramids, the temples of Luxor and Karnak, the awesome Abu Simbel and the less visited sites like Kalabsha and Wadi el-Seboua.

Of course it easy to get “templed out” but the air conditioned boat offers a welcome respite if the going gets tough.

Egypt’s amazing. The variety of temples is incredible and on my three visits so far I’ve always found something new to see in old favourites .

4. It’s exotic and almost on your doorstep

Egypt is described, when you fly from the UK, as a long haul destination. It’s a 5 1/2 hour flight to Luxor and about 5 hours to Cairo. To me that’s a short hop to guaranteed weather and guaranteed immersion in a place I love, seeing things I love. I’m tall so any flying experience brings with it a degree of discomfort but I’d gladly experience it for longer to visit one of the most exciting places on Earth.

5. New discoveries

You may have read very recently of the discovery of a large void in the Great Pyramid. This has stirred up a great deal of academic debate about its significance and whether, in fact, it’s been discovered but discounted before.

Egypt is a constant hive of activity. New tombs, new mummies, discoveries that question previously held beliefs. There are also a wealth of objects being returned to Egypt from other countries due to past illegal activity or, if not illegal, a growing acceptance that Egypt is the proper home for them.

All this means that Egypt continues to fascinate and offer opportunities to be in the country when something exciting happens. There are still several tombs from the late Ramesside period waiting to be discovered so that chance of another Tutankhamen moment is very real.

So that’s it; five reasons to visit Egypt.

I hope you enjoyed it and who knows, perhaps I’ve persuaded you to visit ?.

Ps. I wanted to add more pictures but WordPress kept crashing when I tried. Sorry.

Bad Week

It’s been a bad week.

I’ve had to mask super hard this week to maintain control. I’ve had to ramp up the false jollity and keep a level of humour whilst being assailed, from all sides, with a barrage of frustrating, annoying, disheartening, anxiety bringing and depressing things.

On top of that my partner is ill and, as I rely on her for transportation, amongst many other things, that’s just added to the palpable sense of doom.

I’m tired. Bone achingly weary. My fibromyalgia has found its pain level (moderate) and settled down to a routine of aching, throbbing and deep pain coupled with occasional eye watering highs and the knowledge that my limits, in terms of exercise and what I can cope with, have levelled out.

Unfortunately they’ve levelled out low!.

Several frustrating trips into town yesterday, coupled with the hideous Black Friday hordes, meant I was a nervous, exhausted wreck when I got home and I knew I’d pushed too far and too hard. The fact that I then had to spend countless, frustrating hours on Twitter, websites and online chat, trying to rectify a stores incompetence; and failing miserably, just added to a rubbish week.

I had a letter from the Pain Clinic. Yes, after two years I’ve finally been referred. However, instead of offering me an appointment or asking me to ring for one, I got a generalised letter telling me they existed and listing all the treatments (apparently involving needles) they couldn’t offer to me!. So, no further forward.

My diabetes is bad. I know that. Unfortunately I am Autistic so what I like to eat consists of things that aren’t good for me. I don’t eat a huge range of things for sensory reasons. I’ve cut out chocolate but find grapes, my “go to” fruit, much harder to give up. I should get more exercise and lose weight. I have fibromyalgia and I’m 6’4″ tall and about .3 over my BMI. Don’t they understand how hard it is for me to lose weight when I’m permanently exhausted, in pain and feel like total shit ?. If I was my “ideal” weight I’d be so skinny you could pick me up and use me as a javelin!.

I don’t want to say much about work. That’s now causing a whole new set of stresses and strains and the sooner I’m out of there the better. I’m expending a vast amount of energy behind the scenes trying to keep a couple of other people from crashing and at times I feel like I’m counselling as much as I’m working. That is not a criticism of them because they are friends and I don’t like seeing them in pain but there is a significant cost to myself that uses up stores of energy I don’t really have to spare. I’ve got to be careful.

At times this week I’ve hit rock bottom. I’ve masked it well although those who follow me on Twitter have seen my resulting meltdowns and have reached out with support for which I thank them. I hate feeling so tired, so sore, so…….exhausted with life. I hate feeling that way but after so many years I’m not expecting change anytime soon. I’d love that light at the end of the tunnel, I’d love that spark of hope, I’d love to believe that things can and will get better. Someday.

But it’s been a bad week.

Maybe ..

Next week ..

?.

Testing Times

Ah, the joy of exams.

Does anyone enjoy them ?.

I vividly recall blind panic and how my brain stubbornly refused to recall revised facts. I also recall the sense of impending doom as I sat yet another exam in yet another subject I had no interest in.

Bullying put a real downer on my secondary school experience. After that, and the lack of any practical support or ability to put the bully’s in their place, it was hard to concentrate in lessons where you were abused and picked upon by your classmates. Perhaps, in those circumstances, and a long before diagnosis awareness that I didn’t fit in, I wasn’t likely to succeed.

I just didn’t like school.

I hated Maths. Yes I could add and subtract but I had no need for angles, fractions or trigonometry. I’ve never passed a Maths exam in my life which is somewhat ironic given I’ve spent the last 15 years of my working life dealing almost exclusively with numbers. I understood English perfectly well thank you but reading books described as “The Classics” when they were filled with archaic language and the motivations of their characters were a complete mystery to me, seemed even more of a waste of time.

I resented the sciences. I resented them because they were imposed on me in a bizarre attempt to make me a doctor!. I’d never said I wanted to be a doctor but that career choice had, apparently, been made for me by the science department. I think I thoroughly disappointed them by hideously failing physics and chemistry and barely scraping through a low level biology exam.

Autism is, of course, about interests and the subjects on offer just didn’t represent my interests. There was nothing, or very little, that I could enthuse about. Geography was passable and whilst I excelled at History I should confine that excelling to knowing a lot about Ancient Greece which meant I did well in some exams but failed the big ones because, oh lord, why does it always have to be modern history ?.

After the debacle of secondary school I was thrust into college to spend a year taking new O’ level subjects in an effort to give me something worthwhile to put on a CV several years later. The good thing about college was that you could choose your own topics rather than sit a set curriculum.

I chose Law. Law was solid, predictable and logical. I loved Law but really struggled with contract law, a factor that would spoil my A level effort but was barely present at the lower level. At least here there was a subject I could get my teeth into. Similarly, Politics was a logical, structured topic. I came unstuck here at A level when they loaded the exam paper with American politics, a topic in which I had zero interest. Why do they always spoil it for me ?.

My other choices were “Write whatever you like because it’s probably right about something!” Or, as you know it, Sociology!. I added in Psychology or as I knew it “Write whatever you like and mention sex a lot and it’s probably right” and Art ( for a complete change of pace ).

I have the artistic ( and autistic ) talent of a single cell amoeba so my still life was swiftly renamed still death and my portraits brought forth cries of revulsion and the sound of violent retching resonating through the studio. To this day, given that my Mother and Sister were highly talented artistically, I am faintly embarrassed by my lack of talent.

But that was how things were.

I’m not blaming being Autistic, nor do I blame bullying although both were factors in my lack of educational success. Partially I think it’s that I’m not an exam person. I panic, I go into a spiral of despair and my mind becomes a sieve just sifting all the useful information and watching it dribble out through my ears!. But the main thing is, I think, that I’ve never ( rarely ) had the opportunity to study things I want to study. And these days Fibro Fog has cursed me with a shocking memory and Anhedonia has ripped interests and hobbies from me.

So my opportunity passed.

Exams. Some thrive, some have the perfect brain to recall information.

But for myself ?. Testing times indeed.

Numb

Err..

Ummm…

Well..

Err…

All words I use at the start of sentences when asked to describe how I feel. Or what I feel.

Because I just don’t know.

I’ve felt like this for a while now. Apathetic, lost, numb. A sort of in between place where lots of emotions and feelings circle about me; where I can see them clearly but they prove themselves elusive or “not quite right”.

Sometimes it’s like living in a vacuum. A vacuum where all the feelings have been sucked out and I float in an empty, featureless void.

Of course there are reasons why I feel…or don’t feel, this way.

Anhedonia, the loss of pleasure in interests and pursuits is a major factor in my life. It’s hard to get feelings about day to day matters when you can’t get strong feelings about things you used to be passionate about. If you don’t have anything to latch on to; anything to begin with, then the struggle to identify how and what you feel, is that much harder.

People will say, “Oh, but you feel depressed”. They will pinpoint that as evidence of feeling but that’s not the point I’m making here. Yes, I do “feel” depressed but that’s a general state of mind not something I “feel”directly.

I don’t know what I like. I don’t know what I dislike. I’m ambivalent about most things. I can’t get enthusiastic about things. There’s no desire to do things. There’s no passion. Everything’s sort of “meh”. Everything’s bland, vanilla, samey, and a kind of nothingness.

Looking back I question now, whether most of my life has been like this, a genuine struggle to feel emotions. Have I ever had real feelings ?. What feelings are “real” ?.

It’s a mystery.

Perhaps I’ve always balanced my life between very small windows of high emotions (travel, occasional achievements of note, romance) and much larger windows of desperately low emotions ( family bereavements, loss of pets, relationship endings,…a long list) all underscored with general depression, low mood, crippling low self-esteem, a sense of failure and general apathy towards life with added dysthymia, anhedonia and alexithymia, all thrown into the mix for good measure.

It’s not all bad news. The numbness protects against rash decisions. It prevents me from throwing myself enthusiastically into risky ventures as I don’t have the enthusiasm for them. It stops me from spending large sums of money on things I might like but wouldn’t enhance my life. It reins me in.

But the counter argument is that it stops me from enjoying things because I can’t recognise enjoying them. They make everything a chore; an exercise of going through the motions rather than an emotional investment.

I wish I knew the answer.

You don’t know how many times I try to dig myself out. How many times I try to force myself to, and I’m sorry but I have to use those awful words, “snap out of it”; to kick start my enthusiasm for something.

But I can’t.

Those microseconds of enthusiastic emotion; those clutching at straw moments are ephemeral. They slip through my fingers like the finest gossamer; barely there.

They say the road to hell is paved with good intentions. Somewhere, deep inside me, there are good intentions. Those intentions are tiny voices crying in the desert of the numb, desperately trying to be heard.

One day, perhaps …and I can’t put it higher than that, a tiny voice will be heard and a movement will begin within me that brings me back to the light. A movement that brings sustainable enthusiasm, enjoyment and the rich panoply of emotion, if not bursting through, at least simmering gently, more visible than before.

It’s an everyday struggle. It’s a constant wearisome fight. The enemies of Anhedonia, Dysthymia, Alexithymia as well as Fibro Fog are an ever present frustration. They each hang heavy around my neck and in my heart.

Until I can control them..

I will remain..

Uncomfortably..

Numb.

Why Masking is self harming

Why do we mask ?. Do we feign interest so we appear, to NTs, “normal” and part of THEIR society ?. Do we avoid stimming to avoid embarrassment ?. Do we wear “sensible” clothes (insert appropriate hand actions for inverted commas here) because we believe (probably know) that is what society expects ?.

Masking harms us. No matter how good we are at it, how proficient, it harms us.

In fact the damage we do to ourselves is tantamount to a slow, lingering death. And no, I am not joking.

The strain we put on ourselves, holding ourselves in, being someone other than we really are. The toll it takes on us day in day out is beyond the comprehension of most. It’s an exhausting process, deeply debilitating and, oddly enough, extremely hard to extricate ourselves from. I can’t go home and instantly change into ME. Often I find myself unable to take the mask off and find myself trapped within it through the evening. Its stuck to me with super glue, consuming me, reducing the real ME to a tiny fragment of personality desperately trying to claw its way out.

Letting go is no simple process.

Sometimes I find myself having to slip in and out of the mask to satisfy NT requirements if the phone rings. I have to be sensible, that awful “normal” word.

And I hate it.

It is so tiring.

It’s not a paid role. We are not acting. We are surviving. We are going undercover in an alien world trying to blend in; trying to avoid detection and being outed by those who believe, even claim, that they “Know” Autism better than we do ourselves. 

Masking is, in this humble bloggers opinion, a form of self harm. We are denying our own identities; our true selves, and, in doing so, we are not living the lives we should be living but allowing ourselves to be treated as simply another person when we should be out and celebrating our skills, our talents and the many important contributions the Autistic community has made, does make and will make to an overwhelmingly neurotypical society that benefits from those skills and talents yet continues to demean us and treat Autism as sometimes little more than a cheap jibe. 

We are better than that. 

I am proud to be Autistic and wouldn’t change it, wouldn’t “cure” it in a million years. It’s who I am, it’s my identity and I am tired of having to deny who I really am for fear of misunderstandings, embarrassment and more. 

I am tired of masking. Tired of harming myself by treating myself as something less than the whole of my parts. 

I’m tired of not respecting myself enough to stand up for ME. 

It’s time to cast the mask aside. 

It’s time to stop. 

Who is with me ?. 

 

When you can’t talk..

I can’t speak. 

Nobody’s actually listening so the power of my voice has obviously been nullified.  

I’m given permission to speak in my own home. I’m told to “ Go on” as though it’s my turn. I say something but get battered down because I’m wrong or else I try to say something but get swamped by others who have no desire to hear what I have to say. 

Everyone knows better than me. Even when we talk about Autism, what someone has been told is more valid, more worthy than my own experience. There’s a constant barrage of criticism if I do or say something wrong when others, it seems, are perfect and never make mistakes. 

So why bother ?

When you already have severe self esteem issues people don’t seem to understand how damaging this all is. Or they know but don’t care. 

I can’t speak because I’m always wrong. Guests immediately put the tv on without asking. I object but am told I’m being embarrassing despite the fact I would never do that in someone else’s home. I feel an outsider in my own home. I’m told I’m wrong to even mention it. 

I can’t speak because I am drowned out by others who’s voices are deemed to be of mor3 importance than mine. 

Nobody listens. 

So why speak at all ?. 

The lonely path

I see.

I see everything. 

The lies, the spies, what hides behind.

Neither left nor right. 

I see. 

I watch in dismay. I watch in fear. I see and hear the vitriol. The unabashed and unashamed hate. 

The spewing bile. 

Of the unreasoned. 

I see. 

And I hear. 

I hear the lamentations. The anguish. The impassioned cries and yet..

Underneath. 

Without thought nor reason, hurled forth like avenging angels..

They brook no argument. 

They are without reason. They are blind. Blind to all but their own. 

I see. 

They are unshakeable in their beliefs. Even, in the face of evidence to the contrary. They remain..

Unshakeable. 

My path is lonely. 

I walk it in fear but also in hope. 

That hope deflects, disperses, blocks and shields me from the worst

But the darkness assaults me

It seeks to knock me from my path. 

To drag me, screaming into their choice, to make me one of their own. 

I will not abandon reason for madness. 

I walk the path. 

The lonely path.