What you see and what you don’t

What you see:

A mum taking her kids to the school Christmas fair.

What you don’t see

The ride home after where I scream and scream and scream because it’s the only safe place I can do this without someone calling the police. How hoarse and sore I am afterwards.

What you see:

Me going from stall to stall like any other mum, buying child-made Christmas tat.

What you don’t see:

Me, later, curled up on the floor in the foetal position, shaking.

What you see:

A busy school hall with lots of people enjoying themselves

What you don’t see:

Sensory hell: the echoing of voices in the hall, all the individual voices and noises that come together in a great cacophony. The searing heat which makes me feel like I’m actually on fire. The smells, all the terrible conflicting smells that assault me. The terror of not recognising a face in time or not being able to process someone’s words above all the background noise. The flu-like symptoms that linger for days afterwards.

What you see:

Me exchanging pleasantries with other parents and teachers.

What you don’t see:

The conviction that I am doing something wrong, that people must be angry with me or judging me in some way. The post meltdown period of being non-verbal where I have to sign or write things down for my daughter to read because I just cannot speak verbally for hours afterwards.

What you see:

Me queueing for drink and a festive cupcake.

What you don’t see:

Me sobbing as meeting the basic needs of the kids afterwards feels impossibly hard.

What you see:

Me sharing a joke with another mum

What you don’t see:

The self-harm later which I desperately try to steer so that I don’t do any permanent damage.

What you see:

A naughty child, wildly out of control and wilfully ignoring her mum’s pleas to enjoy herself in ways other people are more comfortable with.

What you don’t see:

A kind girl who accepts that sometimes Mummy can’t cope. A girl who tries her best to comfort me by bringing me items that would soothe her. A girl whose most frequent communication (verbal and signed) is “I’m so sorry” and “I love you”.

What you see:

Me leaving a little early, perhaps looking a little frazzled as the mask starts to slip.

What you don’t see:

The days it takes me to recover from this event, the exhaustion, how we live on microwavable food and things like taking a shower become a huge achievement if they happen at all.

What you see:

Me joining in, pretending to be part of a community.

What you don’t see:

How badly this makes me want to die, how my real community are the only ones who I can allow to see the truth because it is also their truth.

What you see:

A mask

What you don’t see:

Me.

What you think:

There’s a mum doing a typical mum thing, no big deal.

What I think:

Why do I do this? Why do I try so very hard? Why can’t I just accept that doing typical mum things is too difficult and usually not worth the effort?

(Because I love my daughter and I don’t want her to miss out on things her peers get to do).

What you think:

I’m not a bad person, I wouldn’t judge someone for being disabled or having dodgy mental health. I am approachable and would try to support them, they could totally tell me if they were struggling.

What I know:

It is not safe for me to admit how bad things often are. I cannot afford to drop the mask and be perceived as not coping. Asking for help only makes me more vulnerable. Being stuck in this situation makes me unspeakably angry at the injustice of it all but I have to suck it up and just carry on letting you believe what you see because the alternatives are unthinkable.

A photo of a tacky child made Christmas bauble with glitter and starts stuck to it

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Dead man’s teddy bear

After three days I make myself open the too-light box.

The sender’s name, marked clearly, meant I was forewarned

It carried a relic of a life.

A stained bear, complete with knitted jumper.

I half want to inhale and hope for smells long since leeched out by time

The disgust stops me as much as the knowledge it would be a disappointment.

The note with careless ease within:

“I rescued N’s teddy bear from being thrown out, we thought you might like it.”

Like? I don’t even remember this bear.

Where did all the others go?

There were rooms full of teddies, too many for a childless middle-aged couple.

You saw no shame in playfulness.

I’m still angry that the house was sold.

That all has changed in those rooms that brimmed with books

At the address I wrote all those letters to.

They must be gone as well.

Too many forgotten memories.

The odd snapshots stick, like the time you went to make me an omelette but scrambled by mistake.

There’s a photo in the box as well.

An old black and white one of you graduating.

All that youth and promise used up long ago.

“…we hope for rain” written as if I might care how the weather is for them

Or perhaps just for something to write and fill the space in the card.

More good intentions from those from your generation who got to spend more time with you.

I envy them that time but there’s also relief that they were the ones who did the dirty work at the end.

It was an end that took an age to come.

I wish I could believe that you are now with the other half of your heart once more.

It must be nearly 20 years you’ve been waiting to die.

You once said you envied my faith.

Perhaps it’s best you never learned there’s nothing left here to envy.

We talked often in my head, particularly on the darker days.

I liked to think we shared an understanding.

Too many ‘shoulds’ trip over each other.

The bottom line is I didn’t like what you became, that’s why I didn’t make the effort.

That empty hulking shell of human flesh waiting patiently to rot.

The piss smell that even the most expensive residential home in the wealthiest of countries still couldn’t quite mask.

The lights went out long ago, when she went before you.

I remember the light in your eyes in the old days.

How many still remember those days? The handful left ebb away a little each year.

You didn’t just love me, you delighted in me.

It made all the difference.

As I clack away here decades later I still take hope from your encouragements

You always praised my writing so perhaps it’s not all so bad as it seems upon rereading

These disjointed thoughts in prose with pretensions of being poetry.

You would have delighted in my girls too, particularly in the cheek.

I must try to do this more.

A dirty teddy, an old photo and an inane card.

That’s all that’s left.

Now I must return the hollow niceties with a thank you note.

Like a bug in amber I preserve my memories.

You two were the only consistently happy memories from my childhood.

So many books shared, the ways we played with words.

You still stay with me when I read.

I’m probably the youngest one left who loved you well

I expect I shall also be the last.

What is the proper place for a dead man’s teddy bear?

 

I carefully pack the bear back in his cardboard coffin

And put it with the other things precious enough to keep out of reach and out of mind.

Whistling in the rain – an autism anecdote guest starring Kipper the dog

I was going to tweet about walking the dog in the rain, about the joy of being able to go out and enjoy the countryside at a time when pouring rain meant that most people would be staying indoors. I was going to say it’s not that I particularly like the rain, it’s more about the lack of people. Then one thought chased another as they do and it became evident that I would need more and more tweets to explain myself and then I would feel guilty about hogging people’s timelines and so the only solution was to write it as a blog post. This may well be an example of autistic over-thinking, another tangential example is my friend, undiagnosed but I have zero doubt that she is ‘one of us’, who went to great lengths to explain to me this week that she had not copied me by having her hair cut short, it was that it was getting in her way and so on, it had clearly been worrying her that I would somehow think badly of her for choosing to cut her hair shortly after I had decided finally achieved getting mine cut. I actually hadn’t even noticed that she’d had it cut! I digress.

So I was going to say I don’t like rain that much, thinking about it however, there are a lot of things I do like about the rain. Many of these are sensory in nature. The sound of the rain is soothing, I am not alone in this as the existence of many YouTube videos testifies. The pitter-patter (surely one of the loveliest onomatopoeic words) of rain on my hood, on rooves and so on isn’t so dissimilar to white noise. Rain also means that the sky is likely to be grey and overcast, qualities not generally appreciated by people but for me a welcome relief. I’ve been struggling increasingly with (or perhaps increasingly noticing) glare and high contrast light. The muted light of winter is much more suited to my visual processing – I am currently awaiting assessment for Irlens syndrome, this may be a factor here. Even the way my sodden clothes clung to my skin was pleasant in a way not dissimilar to my weighted blanket. I would like to invest in higher quality waterproof clothing but Money is an area of life I’m failing at impressively these days. The smell of rain on the scorched ground is also a pleasant one for me, we haven’t had any rain for weeks and this summer has been warmer than usual. I’ve been struggling a lot with the high temperatures. I’m bored with my own puns about summer putting the ‘melt’ in meltdown, umpteen meltdowns later it’s just not funny anymore. I’m actually looking into moving home to somewhere with a generally slightly cooler climate – The Move is something I’d like to write more about in future posts.

Thinking all these thoughts and others about the rain made me think of one of P’s favourite books.  I did promise Kipper would be making an appearance in this post, partly because I think this blog would benefit from a few more pictures. Kipper’s Rainy Day by Mick Inkpen (what a fabulous name for a writer!) goes like this: “Kipper loves the rain because rain makes puddles. And puddles make… a splash!”

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Let’s ignore the grammatical issues of starting a sentence with a conjunction… ok I can’t do that, let’s just state that this is clearly poor use of grammar but the book has other redeeming features like cute animals. The law of sod states that having criticised somebody’s grammar I will now make 53 grammatical errors which will be pointed out by other zealots. As a friend of mine is fond of saying (this may in fact be a quote from somewhere): the price of pedantry is constant vigilance! I digress again. The book is a lift-the-flap book and goes on to describe several animals who (allegedly) like the rain.

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The story culminates with a cat who does not like the rain and a statement that the thing Kipper likes best about the rain is getting dry again. I have some issues with the idea of getting wet so you can enjoy getting dry, it seems rather like Allen Carr’s analogy of putting on too tight shoes just to have the relief of taking them off. My daughter however loves this book. I therefore know it by heart. She particularly loves the cat being sad about getting wet and then being happy again as Kipper dries him. I’d rather like to add a page to the book – “does anyone walking the dog like the rain?… This autistic does!”

I’ve not been having a great day. I’m in that awkward place where things aren’t bad enough to be labelled a ‘crisis’ in my head, things are just averagely bad. This would be an ideal time to draw on friends’ support but communication is also harder right now (as opposed to when things are Really Bad when communication is impossible – ha!) Yesterday, despite being very much in this not great mental place I managed to do some things which were hard. I went to a medical appointment in a new place with unknown healthcare professionals – always going to be stressful. I also took the dog for a walk on the beach, somewhere I usually love but has been out-of-bounds over the summer as there have just been too many people. I don’t cope well with the public. I was lucky yesterday, despite the weather being sunny there weren’t many people on the beach. This is what lead me to making the most of the rain today. There’s a real safety for me in rain, the more intense the rain the lower the probability of people being out in it. I’ve had a lot of bad experiences with people, strangers, shouting at me apropos of things I can’t begin to fathom, I don’t understand why this happens to me so much. I have so much anxiety about going outside, even in my own garden. Another key factor in wanting to move is my need to live somewhere far less populated than where I am now. It varies with how well I’m doing but often I feel leaving the house is putting myself at risk, at unnecessary risk. I do however love being outside, particularly on the coast or in the countryside with the dog, he is good company. The fresh air and exercise are good for me physically and mentally. There’s also the responsibility of dog ownership, I am compelled by this duty to walk the dog at least once a day. I know many people don’t bother and the world will not end if I fail to walk him but I love him and walking him does me good – generally, so long as people aren’t unpredictably awful.

So I have achieved a small thing, I have ticked the boxes of walking the dog and getting some exercise today. This makes me feel a little less terrible. It doesn’t solve all the things which were upsetting me earlier today but I did at least take a break from them which is something. Dog walking can be good self-care for me. I even caught myself whistling as I walked along. I don’t walk with the typical gait of a person walking in the rain – head bent, slightly crouching, trying to escape every drop. I relish the safety of being able to go out and I hold my head up with a genuine (as opposed to when I am passing) confidence. I was whistling contentedly in the rain for a while, for today that is enough.

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(Pic of the faithful hound while walking on holiday recently).

On Naming Names

I stand and watch the other parent call their child by name as they encourage them in a park: “Come on Isabel… well done Isabel!… Isabel where are you hiding cheeky girl?” This is a thing I cannot do. I can physically talk, I have verbal skills, I don’t stutter, externally I am usually able to pass for neurotypical. Yet I cannot use my daughter’s name, the word is there in my head and yet it’s so hard to get it to pass my lips. This leads to all sorts of linguistic acrobatics until I find I simply have to use it. The responsibility of choosing a name for my child was particularly hard for me, particularly as there was a time limit on this. I find using her name is not so bad somehow if I’m doing something like taking her to the doctor and checking in for the appointment, I expect to be asked for her name and that I can manage, perhaps because it is compulsory.

It’s not just my daughter’s name I have this issue with. For me using people’s names feels similar to maintaining eye contact, I can do it, I can force it but it’s never comfortable. Some autistic people have described making eye contact as similar to trying to look into the sun. Nicknames or things like job titles or the role the person plays in my life feels somehow safer ground, something I have a little more control over.

It was in fact this issue with my daughter’s name which lead me to realise I was autistic. (Forgive me if I’ve described it before on this blog, I don’t tend to reread posts once posted). I was reading Look Me In The Eye by John Elder Robison. It was by no means the first autistic autobiography I’d read, I considered myself pretty well clued up on autism already. John described how he couldn’t call his new baby brother anything other than the nickname he’d given him – ‘Varmint’ if memory serves. This rang such a resounding bell with my experience with my then baby daughter that I seriously considered for the first time that I could be fully autistic myself. Until that point I had believed that I was just particularly empathic (!), that I could put myself in autistic people’s shoes fairly easily because of my experience with depression and anxiety.

A few of my ex partners complained that I never used their name. I’d always use terms like ‘hun’ or ‘love’ instead, never the name. Going out on a limb and making assumptions about how others might feel here – I think it’s a bit like if I were to call my mother by her first name instead of ‘Mom’, that would be weird for most people right? (Yes I’m a British person who says ‘mom’ instead of ‘mum’,  it’s because she called her mum ‘mom’ as they lived in a ‘mom’-using country when she was growing up, I do however always refer to her as my mum as this is what people expect).

So people end up with different labels which I use to describe them: my childminder, my friend who is a teacher, my pregnant friend, the friend I go to the pub with and so on, bizarrely referring to someone as somebody’s something like saying ‘Bob’s friend’ or ‘Mary’s sister’ isn’t so bad, a further degree of emotional separation from the name perhaps…  For the most part this doesn’t bother me, I’ve far greater problems than this strange inability to use people’s first names and I’m well used to finding workarounds. It does bother me with my daughter though. I know it’s ok for me to say “Well done darling!” or “Come here you little hooligan!” instead of using her name, I’m sure there’s many other things which are far worse about my parenting. Yet it niggles and I have a sort of envy of people who can so freely call their child’s name across a playground.

I have some hope. As with Robison my nicknames evolve over time – a quick google tells me I was both right and wrong, his kid brother was originally nicknamed ‘snort’ and then later ‘varmint’.  My daughter whose original nickname was ‘Piggy’ has now become an approximation of her real name which she instigated as a way to refer to herself while she was learning to talk. Now she has learned to say her name properly but the approximation has stuck. I’m aware it’s not her real name but it’s as close as I can get for now.  I still refer to her as P online, mostly for ease and anonymity and she is still Piggy with friends who have come to terms with this nickname – some people have been very judgemental about this name, saying it’s unkind etc, like I had any choice over what my brain chose to label her, it suited her as a baby who was quite the frequent feeder.

These issues of identity mirror my own in some ways, I take pains to protect P’s identity online as I do my own. There are some trusted people who know my real name as well as this alter ego, they are few and I plan to keep it that way. The anonymity gives me a freedom to be more honest, however unsavoury that can be at times.

The bad fight

Punch drunk I reel, stagger, desperately try to regain my footing. I’ve been fighting for a while now, I’m not sure how long. The impact of previous blows smart still as more come in, buffeting me from one side to the other. Somewhere in the distance is rest and balance, they seem far off, hazy, not quite real. If only this were all real, if this were some physical illness – what a terrible thing to wish on oneself – rather than the silent, invisible fight against the Black Dog and Rabid Wolf tag team who personify my depression and anxiety. Being able to pass for someone who’s not completely fucked in the head is just another burden, a heavy sack of responsibility that I can’t put down. I don’t deserve to share the load with those who care about me and they don’t deserve to take the strain. I cast about for the solidity of reason, searching for causes and explanations – if only I hadn’t done this, perhaps if I had done that I wouldn’t be in this place again? Reason however is a mirage and as I frantically surge towards it it becomes another mockery, another defeat. I don’t want to fight any more. I want to give in, to give up and lie down and die. I punch myself repeatedly in the head, or at least I would if only I had the nerve. The urge to hurt myself becomes another whip to torment myself with, the self-judgement of others’ judgement bearing down and suffocating me. I let my child pull my hair, she laughs, there’s no malice there. I want to say “I’m sorry darling, sometimes Mommy feels so sad and wants to hurt herself”. I hate that in the future she’s likely to have to endure the fallout of my battles. I feel guilty for hoping that her sweet kind nature might be something I can lean on in future, that after a fight she’ll bathe my wounds and hold me while I cry. She deserves better than that. This is the way things are.

Musings on identity

A few weeks ago I heard someone say autistic people often struggle with the concept of their own identity. My gut reaction was to baulk at this, I thought of the wonderful autistic communities, diverse yet unified by experience, that I am privileged to call myself a part of. I do feel in many respects defined by autism, it pervades every aspect of my being.

Yet as I contemplate the timelessness of being, that all things that were and are and will be are one, I also feel that I am not autistic. Some time ago now I wrote in my description of myself for this blog a list of labels but then added that none of these defined me. I simply am.

The more I look for the profound the more I miss the profoundly simple. My child, so young, knows far more than I. When I think of my past, I often feel as if I have had many incarnations in this life. Many different beings who have defined themselves by relationships, jobs, interests and so forth. This leads me back to the Fight Club quote below.

fight club

I see that all my lives, the different ways I have presented myself, were nothing more than outward clothing, the fucking khakis that I mistook for my self.

In that case what am I? I am one of many. I am a person who must use words and labels and images to draw on the canvas of life to express myself. The paints I use for this still-life are not the actual fruit but merely a tool. That is not to say that any of these things are wrong or bad or mistaken, tools in themselves cannot be such things, words can be no more than words.

It is not wisdom or learning, or even experience that defines me. The only reality is this moment. This moment is all moments. It is eternal. Time is meaningless.

Time is the greatest enemy, or feels as though it is. All goodness and love is destroyed by it except in the memory which will also one day be defeated by time. I need to let go of this concept of life as a chronological continuum. Underneath all the clothing my naked soul is the same. Everything that I shall be I already have within me just as I have the eggs of unborn children within me. I do not know what that child will look like, it does not matter for that is in a future which does not exist. In this moment there is no I, I am and yet I am not. I am a part of a larger collective, a vast hive of bodies and animals and nature and life and molecules. Inwardly also my infinitesimally complicated mind thinks and double and triple thinks every possible permutation of thought.

Is this a spiritual matter? Does that question even matter?

There is no teaching here. Nothing that is important can be taught, it cannot be acquired at any price. I would like to get to know the actual self, not the silly way it can present itself.

My troubled mind often seeks peace. I suspect the way to achieve this (how does achievement work if time is removed from the equation? Whatever achievement there is already is) is by practising being with myself. In my calmest moments I am me, I see the naked truth of my being and I do not flinch. Like many I try to hide from myself, afraid of being alone in the silence of my self. I drown it out with distractions, shallow aspirations, all manner of meaningless dross to avoid simply being. I do not need to travel to remote places to be with myself (although this seems to help). I do not need to think deeply to be with myself.

The word tools available to this human form are not sufficient to express my being, they can only hint at the truth. The real expression is in the being itself.

I am already complete.

I am.

 

 

Stream of shitfulness

The self-loathing is strong this morning. There are physical signs that all is not well in the kingdom of my mind, the toothache and ulcers caused by bruxism, the difficulty sleeping, the excoriation, they’re all just tell-tales of a shitful mind.

Shitfulness is like mindfulness only shitty. It tells me that my dumbfuck brain is being a twat again, it’s making me feel all this shit, it’s making me hate myself even though on a good day I believe that I’m ok enough. I am so angry, so absurdly angry with myself for feeling the way I do. I desperately want a reason, some explanation for all the pain. Mostly there is none. All that’s there are a million additional layers of self-castigation, hating myself for hating myself. I know all this will pass, as much as it feels as though I will always end up back in this place I know there are fucking puppies and rainbows over the horizon – shitfulness taints every ray of hope with its lens of excrement. This peace, happiness even, is not real, not to me right now. I know it but I can’t feel it, I can’t make myself believe it when my only faith is in my own shitfulness. Logic does not apply, as much as I yearn for reason there is none here. I try to step outside of the whirlwind of feelings, to let the storm batter my mind and wait for it to pass, but I cannot accept being this way.

There’s a comfort in shitfulness, it’s a known quantity at least, there are others who know this place with as much familiarity as I.

Every day I work, work really hard at being ok, at being ok enough to mother my child, take care of my basic needs, be good enough. This disability of fuckedupness is hard, it sneaks up on me when I think things aren’t so bad and it tells me I am terrible, that I ought to be able to do things that are so far beyond me in the present you may as well ask a fish to ride a bicycle. I judge myself by the standards of those around me, the ones who don’t experience the world in the same way. I hear their thoughts as they see me, surely this person is capable of feeding herself, of dressing herself? Whyever not? I make no sense to them, nor to myself.

It’s a kick in the guts that despite my long hours of working at self-care, of trying to learn how to make myself well, I still fail. I still come back, tail between my legs to this wasteground of thought. I even know things which might help (they’re tricksy things which do not always help and may also make things worse) but I’m afraid to try them. I’m afraid of not being here in this familiar dungeon, like Stockholm syndrome perhaps I stick with what I know, what I am well used to.

I want to punish this mind, this useless hunk of meat that is my body and brain. These ridiculous synapses and chemicals which hurt me so much. I want to beat them until they learn to behave.

I have come to believe that the ultimate goal is this life is kindness. This is the one art I really aspire towards but in order to be kind to others I first need to learn to be kind to myself. I need to forgive these feelings, accept them as a part of who I am and listen to them with patience and without judgement. This is the way that it is, the way that it has always been and most likely the way that it always shall be. I want to see these passing thoughts and feelings as the weather systems that they are. They are me and yet they are also not me. I am not my thoughts, no matter how much they try to tell me what I am.

I will work now, ‘real’ work as opposed to self-care (ahh more judgement there!) I will lose my train of thought in doing. I will lose the pervasive shitfulness. I know that it is there, it is always there, I will return to it many times in this lifetime and whatever lies beyond.