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Fight, flight – and the other thing

They say that fear and anxiety create the cortisol hormone that creates the fight or flight instinct. But as I sit here with my dry mouth, my thumping chest, my churning stomach, trembling limbs; with a propranolol tablet making it’s way down my gullet, a chamomile teabag brewing beside me and a clock telling me I should have been asleep three hours ago, I know there is something else:

Cortisol creates a third complex pattern of behaviour.
It’s like a dark, cold black hole, a whirlpool of never ending directionless movement. I am trapped inside a place where neither fight nor flight are an option. It’s like the holding room where those decisions are supposed to be taken but a decision is never made.
‘Fight or flight? Fight or flight? Fight or flight?’

This is purgatory.

I don’t have the prickles of a hedgehog and an ability to roll into a ball until danger has passed, I don’t have roots like a tree and the certainty that I can keep steady until the storms have ceased. Instead I feel like a leaf: trapped and at the mercy of the elements, whirling and hurtling around. Alone, loose and at the mercy of things beyond my control. Only I’m not a leaf – it’s worse because I have a brain and I’m not simply at the mercy of elements that come and go – I’m at the mercy of recurring cortisol that I can’t switch off.
Pump, pump, badum, whoosh, whoosh, pain, breathlessness, pump, pump, badum, whoosh, whoosh, kick in the head, kick in the guts, pump, pump, pump, round and round, on and on.
I try to train myself. I learn about all the ways to relax, to switch off, to concentrate on other things, to breathe deeply. I’ve read about every trick in the book. But this is an old dog, this cortisol inside me. You can’t teach it new tricks. It’s dangerous. And that’s what scares me. It scares me a lot.

I’ve felt what it does to me immediately I begin to feel anxious. I’ve felt what it does to me a day after feeling anxious. I’ve felt what it does to me a week after feeling anxious. I’ve read about cortisol and how it damages the body and the immune system. And while the short-term effects are unpleasant, I wonder what the longer-term effects have in store for me and what is already happening.

Just looking at the time now not knowing when this will stop but knowing I will be tired tomorrow is upsetting me and stoking the fires in my belly. I am pulsating. There’s a kicking feeling in my head. My fingers quiver above the keyboard. And yet, I am not fighting or fleeing, I am merely drowning in this rotating hollow, going round and round again and again in a dark helpless predicament. Being anxious about when this will stop gives it more potency.

The trouble with this fight or flight theory is that it suggests a certain amount of enabling, of action. Yes, in times of trouble and panic and extreme anxiety I can and I do either escape from or try to battle my way through a situation to find a way out, but we are not wild animals and fleeing and fighting are not the only options anymore.

I wish I could run away from this. I really do. I wish I could battle my way out of it too. Alternatively, I wish holding on and sitting it out like a storm with a feeling of reassurance was an option. But there’s nothing to hold onto. This place is the loneliest, darkest, most helpless hellhole on earth. There’s no running, no fighting, just swirling.
You can see, perhaps, why depression and anxiety are so closely linked.

When I look back at what I’ve had to avoid in life to curtail these attacks, much of it makes me shrug. I don’t mind too much. I’d rather feel well. But I can’t avoid being human and having emotions and opinions, and I can’t avoid being part of this world. When the fight or flight instinct does kick in it might be best for my health to flee or fight, but it’s not best for other people so I hold that swirling mass inside my belly and it gurgles and churns until it takes me with it. It is worse at night of course. It feels like it will kill me and then in the morning I find I am still alive. Tomorrow I will need to take a trip to a world in my head where life is simple and bad things never happen. I will have to shut things out and shut off the concern. It’s become a habit, this rehabilitation period.

People like to tell me “we’re all the same”, “we’re not so different”, “we all have the same needs”, “everyone feels like that”. I know some of it is well-meaning so I don’t know what to say. But I don’t think every feels the same. I know everyone doesn’t feel the same. And I wouldn’t wish this on anyone.

I think the propranolol is working. My chest is not hurting quite so much. That’s something I suppose.

I’ll try one more chamomile tea and hope that writing this down has helped.

The Freaks’ Guide to Feeling Normal*

(*where both “Freak” and “Normal” are overrated)

shutterstock_91734881When I was a schoolgirl living at home, I was the only girl in the world who lived in a house with a compost bin and whose house smelt of tealeaves and orange peel; the only girl who had 2 teachers for parents; the only girl whose clothes were washed in non-biological washing powder and hung to dry in the dining room (oh, the shame!); the only girl who wore her sister’s hand-me-downs (even though my sister was shorter than me); who lived on a hill and not in a normal street and didn’t have any friends close by; who didn’t go to Greece or Crete or Spain or Corfu or the Canary Islands or the South of France on holiday, and instead who had to visit cathedrals; whose parents didn’t have a car and who had to travel by foot or bike or bus or train; the only girl who was tall and skinny; the only girl who had a room so small there was nowhere to do my homework; the only girl who bit her nails; the only girl who was shy; the only girl who had more books than pets in her home (don’t get me started on the pain of no pets allowed…!); the only girl with no brothers; the only girl whose mother didn’t run around with the hoover/shopping/cooking/ironing/washing going all at once and instead took Open University courses; the only girl who learnt two musical instruments and sang in a choir; the only girl who didn’t have all the most up-to-date electrical gadgets (I think we were the last people in the world to get a TV remote).

It was hard to put my finger on which of those major, major differences was making me feel like a freak but it had to be at least one of them. I spent a lot of time identifying differences and imperfections. I really was very different and awkward and sticking out like a sore thumb. Nobody ever knew about my distress, no one knew about my struggle to fit. I don’t think I could have verbalised it even if anyone had asked me to try to share my feelings. But no one asked anyway. They simply singled me out for persecution every now and then or waggled a finger at me and wrongly accused me of carrying an attitude or behaviour I didn’t recognise in myself. I was obsessed with how people were reading me and how they seemed to be seeing something I wasn’t seeing. I continued to internalise my intense distress and suffered with stomach aches and patterns of fear. And I continued to be secretly furious with my parents for creating the situations that made me feel such a freak.

Maybe if I could pinpoint where my parents had gone wrong I could try to be more like other people and perhaps I would be fixed. Perhaps if I put on weight and grew my nails and tried to look more like other people it would help? When I got older I could get a car and pets and biological washing powder and the latest gadgets and go on holiday to Greece and vacuum a lot – maybe even vacuum a lot in Greece… I would be brave and cool (not too cool) and have a tumble drier and teabags. That might do it. And I could make sure my children didn’t have to suffer the same horrors as I did. At least they wouldn’t turn out like freaks. I had to find out which significant difference that was happening to me, nay: was imposed on me by others, was making me feel so wrong and not right and all faulty and not at all fitty-inny. It was worth changing my hair colour to see if that was the problem – so I did that a few times. Quite a few. For years. And years. And then I would regret that and go back to light brown.

I could observe normal people, throw off everything that might mark me out as different and I would become normal. Surely? And then and only then would people let me in and I would be happy because I would be just like everyone else and I would fit. All gloves and puzzle pieces.

Did it work?
Did it Betty Martin…

I was disappointed that shaking off all my childhood hangups hadn’t worked. I couldn’t identify such striking differences between me and other people anymore. But even the security people in the supermarkets knew I was up to something and followed me around. Maybe I needed smarter clothes? Or a confidant stride? I never stole a thing in my life. I was supremely honest! Why did they get me so wrong? What was it about me?

But I didn’t give up. I made lists and plans and projects and visualised me being normal and worked out how I could make that happen.

I had the odd hiccup. I had to bash my head on a wall a couple of times. I had to smash up the odd clock and the odd mobile phone, but I’m nothing if not optimistic and determined, and when I make up my mind I’m going to do something I am going to do it. I threw off the odd panic attack and sudden unexpected headaches and the weird desires to scream and hide in a tree, and followed the design for a good sociable woman I had created for myself based on observations and well-meaning advice. If I was superbly terrified about an evening out all I had to do was drink gin to shut my brain up and grin a lot. When you’re young and pretty that seems to work.

“Operation: Normal” was taking longer than expected though. Twenty years after leaving home it still hadn’t been achieved. But I wasn’t giving up. I’d managed to fake it quite a few times short-term and that was giving me hope.
Until, that is, my father died and I was exhausted by everything and fed up with life for not giving me back what I felt I deserved for all my effort. And people – people were supremely ungrateful when I knocked myself out for them! Couldn’t they see how bloody hard I was working for everyone and how it was killing me? Why did I still feel it was not enough?

I shrank away from life. I stayed home more. I spent a lot of time reaching into places I hadn’t reached into before: places that had nothing to do with trying to be normal or trying to fit or trying to be liked. I learnt to be more still and more thoughtful and I learnt to say “No.” I had been doing things I didn’t want to do for years – things I had hoped would make me more accepted, things that would stop people from singling me out as different, and I had failed. I began to stop caring. Well… caring quite so much. Everything that had been reliable and consistent in my life since childhood had crumbled and I had to build a new version of me. I didn’t have the energy to plan how that version of me would emerge so I cocooned and let the rebuild happen by instinct and natural progression, and waited until I was ready.

When she emerged she was cautious and hungry. She was older and wiser and rather life-weary but ready for new things. This new me wanted honesty and ached for a life free from lies and pretences. I knew now how short and painful life could be; how there was no point wasting time on silly pretences, on images and appearances. No, I didn’t yet know why I was still different and struggled so hard to fit but it was time to be honest about how I felt.

But I still felt guilty for not trying hard enough. I should have mastered normal just like everyone else had. Other people must be trying harder, right? They were all going around completely shattered, close to a breakdown and hiding it well perhaps.
Despite this guilt, I found that some of my calmest, most peaceful and most healthy periods were those when I stopped trying. I allowed myself to do things that gave me these feelings again. It felt wrong and abnormal to be enjoying solitude, to feel so lifted by hours alone writing, to get a buzz of sheer joy when a social engagement was cancelled, but I kept returning to that which made me feel safe and whole and alive and satisfied.

What a confusing place to be though. What was wrong with me? Didn’t I like people? Was I depressed? I didn’t feel depressed. And I’ve always been very interested in people and wanted to fix their pain and make everyone happy. How very strange that the very things we might use to describe an unhappy person were actually how I was happy, and the things that made other people happy made me thoroughly miserable and exhausted.

Being honest gradually began to help: I found out that other people don’t worry about stuff as much as I do. I found out that stuff I find really hard they find really easy. I found that when you start to open up, it’s like turning on a tap and stuff keeps coming out. You find yourself saying things you weren’t expecting to say and you didn’t know you felt. You find you had been hiding things even from yourself. (Well, maybe you hadn’t, but I had.) And maybe that was my biggest problem: the hiding. And the pretending.

Talking openly and honestly is like picking up a paintbrush and making a picture: things become more whole and real and far clearer. It can get a bit messy and you can see the wrong things until everything that’s emerging is out there. But the fuller the picture, the better you can see what the story is and the better you can understand. You’re less likely to judge, misunderstand or disapprove if you’re made to look at someone properly.

So I painted a picture of anxiety, of hard work striving for perfection, of social struggles, of unexplained illhealth, of a weird craving to hide and be alone – and finding immense pleasure – and not depression – from that, of a life of misunderstandings despite my best attempts to avoid them.

And the picture emerged as a person with Asperger’s Syndrome – and some pretty normal traits and feelings for a person with Asperger’s too.

I had found my normal.

It wasn’t the compost bins or the pets or the trains. It wasn’t a shortfall in my effort. It wasn’t depression or brown hair (it’s pretty grey now anyway). It was nothing I was doing wrong at all. All that was wrong was the pretending and the secrecy and the fear and the absence of place to call myself normal and be my normal.

It’s seven months now since my assessment and I still cry with joy and relief at the clearer picture of my own version of normal that has emerged. I wasn’t getting it wrong. It was just the way I was. I still struggle with people’s expectations of me but I know now that they are wrong and I’m clever enough to build up a picture of what I can expect from myself better than any of the people who don’t fit into my normal.

It’s helped me to think of myself as in a kind of minority. Someone recently described females with autism as “a minority within a minority” because we are so sparsely identified and understood. Sometimes we feel our differences more acutely than they can be observed and it is up to us to tell everyone else but it is up to everyone else to listen because when we are allowed to be our normal we are joyful.

These days our house smells of tea leaves and orange peel and I wash our clothes with non-biological detergent. I even hang washing in the dining room sometimes. My poor children. 😉

If you don’t know you have Aspergers/Autism you keep trying to identify what’s wrong/different and trying to put yourself right. It’s exhausting. Finding out what makes you feel like that helps you repair and move on. And it helps you deal with others’ expectations too. I wrote this to try to explain because there is so much untold pain in an autism head.

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