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Posts from the ‘Thoughts’ Category

Family. Familiar. Familiarity.

I’ve fished out my long pyjamas with the hare design: the familiarity is comforting, as is the super soft cotton.

Familiar habits and familiar objects reduce stress and provide immense comfort. I know I am not alone in this.

This isn’t just an autistic thing, it’s a human thing. (I do believe it’s likely to be more important to many autistic people though because the stress of processing a tonne of unfamiliar stuff is exhausting, and so something so totally familiar that one’s brain can take a rest is important.)

Ever since we went through the stress and upheaval of moving in June, the return of each familiar ritual, each familiar knick-knack, and each familiar kitchen item has brought massive comfort to us all. Last night we hung our old kitchen clock on the wall and it told me it was time to breathe. People keep coming back to fiddle with things like the electrics and patio windows and straighten things over the last couple of weeks, and there’s a small hole to fill outside and a new front door is on its way, and we’re expecting bedroom carpets on Friday so we’re madly trying to get ready for that but mostly we’re filling the space in a living rather than surviving kind of way and can keep popping back to our hired garage to fetch a cooking pot or glasses and other things that signal functioning domesticity and familiarity.

We’ve all longed to bring back things and bring back our ways. All of us. Home is about what you do and with whom you do it. Peace is an end to conflict, distress and disorder. So things that can bring back a semblance of a more settled past reduce trauma.

We have been traumatised, disorganised and unsettled. 2018 has, so far, shattered and scattered us – not scattered from each other but from ourselves and from our normality. The expression “my head is all over the place” has never been so apt.

On Friday 8th June we left our clean, bright former home with a huge bank of memories. As I dusted the last skirting board Rich got the call to say the house was no longer ours. This was the only home our youngest child remembered and where she grew from toddler to teenager. It was the home where I passed my degree, published a book, found peace, space and confidence to write and expand my knowledge and gained a little self-love and learned how absorbing myself in peaceful creativity was all I needed to fix my turmoil; where I learned blow-by-blow of my father’s terrible illness and death, then of my son’s terrifying head injury; where we put up family and guests over the years, and watched our eldest leave home and our middle child go from primary school to secondary school to college, to first car to second car to 21st birthday.

It’s where we took our eldest back in while she rebuilt her life and set up her own business.

It’s the last place I sat and had a cup of tea and a chat with my darling father.

It’s where my husband heard that his beloved father had died; where we went from young to middle aged and grey. It’s where we stood and listened to the neurologist give us the news we had begun to suspect about Richard over the phone. I can still picture each room I was in when each life changing phone call came in, and June of 2008 when I paced up and down on the patio, walkabout landline pressed to my ear, listening to bad news and more bad news as the most beautiful time of year took hold around me while horrors of our father’s leukaemia, treatment and pain poured into my ear is a memory of roses and footsteps, long evenings and sick fear.

When we first moved to that home, no one even owned an iPhone yet, Brexit would have seemed impossible, Prime Minister May highly unlikely and President Trump an absolutely incredible joke. No chance.

Pinochet and James Brown and Saddam Hussein were all still alive. Our mothers were still married women and not widows.

We’d created a flow and a rhythm and could get on with our lives because we weren’t distracted or disoriented by the unfamiliar.

There is something incredibly heartbreaking about taking a big old map of familiarity and cutting it up into small pieces in order to move house or initiate change. It is stonkingly painful and unnerving. It is particularly so when life is difficult and upsetting and you need that comfort.

When we walked through the front door as the new owners of Number 21 in June this year, it felt anything but ours. Someone had been a fan of fried food and fatty meats over the years in that house. Someone had been a smoker over the years. Someone had been abroad and been inspired by paint colours that better suited the Caribbean. The banister was sticky, the cooker was broken and filthy and stank of old, burnt animal fat that made me gag, the garden was no longer a garden but a hotchpotch of grey gravel, red and black brick, rubble and unusable outbuildings painted primary blue. The upstairs was a chaotic tumult of mismatched carpets, and the downstairs a cacophony of cheap laminate floor that cracked irritatingly under each step. It had looked okay when we’d viewed it but the harsh reality was that it needed tonnes of work doing.

No one seemed to have had a vague care about who would be entering that house once they left and our hands met grease and dirt on many a surface. Our youngest even woke to find old toe nail clippings on the floor on the first morning.

The impregnated memories of previous residents and thoughts of impending building work, combined with the exhaustion of selling up, downsizing and moving, on top of a Parkinson’s diagnosis and preparations for closing down and selling of a family business left us in what I have now come to recognise as Coping Mode. We simply talked practicalities, and monitored and recorded progress in order to survive. There was no way we could afford ourselves the luxury, at this stage, of discussing just how awful it was surviving in a small, foreign space surrounded by unfamiliarity, dirt, dust, noise, and other people’s, often offensive, smells.

The building contractor who followed our requests, organised the work, and hired all the subcontractors for all the jobs we wanted doing called our renovation project “A Challenge Anneka” (you’ll have to be British and over 30 years old to have any clue what that means…) but we felt supremely challenged ourselves.

I hate chaos, clutter and dirt so much it makes me squirm. I went to bed many a night with the windows wide open trying to ignore the taste and sensation of concrete dust and plaster dust in my mouth and nose. My senses are ridiculously highly tuned, and foreign objects – however tiny – scream at me. Life is a constant battle of trying to quieten or ignore those screaming senses at the best of times, but this was extreme. Foreign sights, foreign sounds, foreign smells, foreign tastes, and foreign sensations all around me began to drive me mad. And all the time my natural desire for cleanliness and a clutter free home so that my poor over-busy mind could rest and stop processing every damn detail, was being monumentally challenged.

Richard needs to eat regular, healthy meals, he needs to rest and recover from the extra exertion simply having Parkinson’s uses up and he needs to exercise regularly to keep his dopamine circulating. He needs to remember to take the right drugs and the right supplements at the right times. Just like me, he needs peace and periods of time when no one is asking questions or creating extra work or upheaval. We both began to find it difficult to attend to each other’s needs as we concentrated on our own survival. But somehow we did the bare minimum and we have survived.

Fortunately, despite being a much more built up area, the small strip of no-mans land between us and the modern houses behind our garden, the nearby river and the nearby Great Field mean that we haven’t lost bird song. The crows, seagulls, starlings, sparrows and pigeons are all here, and at night, when all is quiet and I feel I am the only person left in the world, I can hear a tawny owl couple communicating to each other.

I am learning the new soundtrack to my life, and learning to accept – if not quite filter out – all the new stuff. We haven’t quite created the right rhythm yet but at least it’s no longer a rhythm-free filthy chaos of unknown beats and crashes.

I think I will be traumatised by 2018 for some time. It will take me a long time to put the upset far enough back to live with it. I’ve come to recognise in myself how trauma doesn’t want to fade but wants to keep upsetting me and causing me ongoing pain. But exploring your own neurology can make you beautifully self-aware and able to accept moments of failure as human and just part of life.

I coped. I had mini failures and I will continue to. But I coped. We coped. And this too will fade into birdsong. Eventually.

We are not OK and that’s OK

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Dylan the dog coping with the chaos

Whilst over Christmas we might have looked like lucky buggers with enough time and money to be swanning off to Australia, in truth it was more like “pinch from Richard’s pension to have a holiday of a lifetime because we don’t know what scary news 2018 will bring with his brain scan looming”.

We hadn’t had a holiday for many years and we’d never had a big holiday. And we’d only ever had one family holiday with all five of us – which Tess was far too young to remember.

Richard had almost stopped surfing and we were both suffering from anxiety. The shop takings were down, the books weren’t balancing and we’d borrowed money three times to see us through winter and for much needed home improvements. We’d both also had 10 years of various physical and mental health wranglings to deal with on top of losing both our fathers.

Rich doesn’t like talking about this stuff. He grins and tells everyone he’s fine even when he’s absolutely not. He internalises money worries until he’s ill. So I joined him in the stoic front while privately I was in turmoil about his health and our future.

Grin and bear it is not my style though and I found it difficult to pretend – particularly as I had done months of research and knew the various reasons for tremors, and had contemplated the possible outcomes and the effects on not just his but all our lives.

While we were away thoughts of what we would be returning home to prevailed, and on the flight home I watched Richard’s tremor increase with the tiredness and anxiety, and wished I could stop it. I wished I could turn off his brain and give him a break.

When we returned from Australia in early January we had to gear ourselves up for hospital appointments and test results with months of winter still left to plough through. Surely it was finally time to stop pretending we were okay?

I eventually broke my silence and told Richard to prepare himself for a positive Parkinson’s diagnosis. I was worried that he had been hanging on too long to his former GP’s opinion that it was “just a tremor” and to the story he was telling himself and others that the scan was just to “rule out” Parkinson’s. I could see him coasting into yet another year of stress and full-time shop-running shenanigans without giving himself time to process the enormity of his own health issues. We are complete opposites when it comes to denial or self awareness and discussions of such, and I could foresee life getting very difficult with this “just keep plodding on” mentality of his.

It was time to dig deep and lay it all out.

So for seven months I have pushed to put what is important to the fore. I have made all our actions and visions and plans about family life and simple life; about peace, about reducing stress, about visualising what is best for all of us and making it happen. I am trying to force us both to recognise and accept – and love – each other’s quirks and limitations and work around them to make them no longer limitations.

Money, school grades, possessions, appearances, status, other people’s ideas about a life well lived are all off our radars. Bugger all that. We’ve bought a small unassuming house in order to pay off our mortgage, and don’t give a flying fig what people think of us.

Life is now going to be about acceptance, day-to-day appreciation, little stuff, beauty in nature, eating well, and space. Space in our heads, space in our timetables, space away from duty and phone calls, space away from the rat race. We have split open everything we ever were on the surface and are being the real us that we always were anyway – before we stopped lying.

And I do believe silence is a lie.

Other people use lies to survive, I get that. People need to ignore the truth in order to cope. Some people’s very existence depends on being as unaware of their true selves as possible.  But we’re using the truth to live by. The painful truth and the honest truth and the comfortable truth.

The hurdles to getting to that truth are huge though. We have a list as long as our arms of things we need to achieve and throw off, to finalise and to tolerate for a while, and we’re only down to our elbows so far.

We are exhausted. Richard’s tremor is awful. I feel sick regularly. I run out of peopling energy regularly. We are absolutely pig sick of eating out, of microwaving, of being uncomfortable. I don’t usually eat bread but I have had to for the last few months and I have a constant bread belly pain. We don’t sleep well at night, we get up early each day in case the builders/plumbers/electricians are here. We are unnerved by the inconsistency of life on a building site and of never knowing when noises will stop and start or if today the builders will come or they won’t come, of who wants to discuss what and what we have to answer. The days of nothing are as bad as the noisy days because the uncertainty is traumatic.

The concrete dust and insulation dust are bad for Richard’s asthma, and the decision-making and constant change is bad for his tremor.

I have had to try to forget I have an Asperger’s diagnosis and chronic anxiety. Noises, smells, newness, being surrounded by people, disruption are all excruciating and I am holding on to my big internal Mamma who is telling me I can cope and I will cope and I can collapse when this is all over. Internalising isn’t great though. It gives me mystery pains and nausea. I want to explain to everyone that anxiety is the most inexplicably exhausting thing to deal with and that I can’t live normally. I have periods of insomnia, periods of sleepiness and periods of illness. I can’t say that. Instead I rock up in the space we will one day call our home and sway weirdly from exhaustion, talk less than I should, indulge in fewer social niceties than I should and struggle massively to answer questions amidst the chaos and the noise and the dust. Loud noises make me freeze until they have passed. I can feel myself underperforming and it’s absolutely bloody horrid. I can barely function. And yet I do. Simple things like having a shower and drying my hair before the electricity is turned off this morning and trying to dish out dinner from the slow cooker on a desk in the hall last night are no longer feeling like an adventure but a nightmare.

The list is being ticked off though. And that’s why I’m writing this. We need a reminder of just what we’ve done, what we’ve gone through, what we’ve achieved. I keep visualising the future and feeling impatient that we aren’t there yet, and I need to visualise the past too. Because, hell, we’ve done really well so far.

We’ve processed a life-changing diagnosis, sold a house, bought a house, dealt with the appointments, emails, phone calls and stress involved in those things. I coped with the excruciating anxiety of house viewings that only a perfectionist with crippling anxiety can comprehend. We’ve closed the business and put the building up for sale and dealt with the tirade of communications involved in that; we’ve planned massive house alterations, communicated our needs, tolerated 7 weeks of utter chaos and lack of space, lived without a kitchen, a sofa or a place to eat; we’ve kept up with Richard’s meds and appointments. We’ve put up with incompetence, planning regulations, disappointment and frustration. We have taken on board an enormous amount of heartache and processed some difficult truths too. I’m not going to pretend our lives are in any way perfect right now.

So for now we are busy being not OK. It’s perfectly reasonable that we are not OK. We know how to be okay though and are working on that.

Tick

Tick

Tick

Tick

Tick

The Power to Rearrange

Recent events have taught me many things. Importantly, though, they have taught me that the future is not just ten years away, one year away, one month away, one week away. The future is our next breath, our next step, what we’re having for dinner. Tomorrow is the future – not just sometime; not just some other time down the line.

We can’t put off what we want to do, what we need to do, and pretend there is still time.

Old age is not a certainty. A healthy old age is most definitely not a certainty for us. We (as a couple) know now that our old age – if we are lucky enough to have one – will come with some big challenges. And we don’t know which ones.

A Parkinson’s diagnosis shouts “Uncertain shit ahead!” in a way we’ve forgotten to look out for. Life is all about uncertain shit ahead for each and every one of us. We have Richard’s dopamine receptors to thank for that nudge. I find myself wanting to tell other people “Don’t wait for your nudge!” “Don’t have regrets!”

Remember how you nearly weren’t born. Remember how it was nearly a different sperm, a different egg. How lucky are you to be here?! Life is full of accidents and butterfly wings and chains of events that we can control some of and we can’t control a lot of.

Our simple existence is a random chance to spin around the sun a few times and catch a few summers that we are so bloody lucky to experience. It’s so very precious and so very short and so very precarious.

I’m a very straightforward thinker (believe it or not!)

I don’t believe in meant to be.

I don’t believe that everything happens for a reason.

I don’t believe in any greater plan, and I really really don’t believe in destiny.

I’ve seen too much senseless pain to believe any of it happened for a reason. I’ve seen too much destructive greed and excruciatingly difficult lives to believe it was meant to be.

I’ve seen paths of equally good people go such different ways I can’t believe it was fate.

I believe that life is a series of events that could have been changed if we knew, that can be changed based on our tools, and that can’t be controlled totally because of our genes and our circumstances.

I even believe our power to make the best of situations is partly ours to control and partly impossible to control simply because of our genetic makeup and past experiences.

You can choose happiness but you can’t make it choose you.

This wasn’t “meant to be”. I wasn’t meant to walk behind my husband watching his muscles waste and his right side seize up and those beautiful muscly surfer’s shoulders I fell in love with shrink. Iwasn’t meant to look forward to spending our whole lives frightened of what’s next and wondering if he’ll ever be able to hold his grandchildren when they come along. I wasn’t meant to spend every day trying not to pity a man who can no longer sign his name or write without a huge struggle. He’s in pain when he wakes and slow to get out of bed before he’s even old. How can that be some kind of plan? I wasn’t meant to lose the freedom usually brought by middle age and big kids who no longer need care 24/7 to a disease that forced us to rapidly and drastically change our lives before we were ready. Just as I don’t think our baby sister was meant to die of neuroblastoma or our father of leukaemia.

I believe in atoms and free radicals and chances and missed chances and metabolic cravings and the effects of greedy men on our lives.

I believe in power. I believe in self-power being easier to harness in some of us over others, and however much some of us want life to be better we can’t make it happen.

Being able to harness what you have is a big separator. Whatever the individual components that made me are useful tools in spotting the good in life, in making choices towards happiness, in seeing and feeling the good around me. My chances are better because the series of events that made me who I am today make me better able to choose happiness.

A house full of books, a childhood learning music, much free time for thinking, a home in a beautiful area, educated parents, some fairly untypical opportunities at a young age to be forced consider others and to realise I was lucky to be alive ????? I don’t know? Some of that? All of that? Other stuff? My biological makeup? My fussy guts? My good bacteria? My bad bacteria?

I know I have the power to be happy. I know I do and I know I’m lucky in that.

I know that’s partly because happiness chose me – and that’s not fate or destiny or meant or be. It happened for reasons. But not a reason. And this is why we can rearrange our lives and make it work and be happy. This doesn’t make us better than anyone else. It makes us lucky.

I’m sad about what’s happening to my husband but we will cope and we will find ways around it because we have the power to. But I don’t for a second think it was meant to be. Another kind of nudge would have been kinder.

Sorry.

I don’t know where to start. I really don’t know where to start.

I don’t know where things begin so where do I pick up from?

So I’ll start with reasons:

Anxiety, childhood and adult traumas, being misunderstood and misjudged, being bullied, mystery stomach pains, mystery exhaustion, anxiety exhaustion, insomnia exhaustion, social exhaustion, overstimulation exhaustion, hormonal problems, problems with executive functioning (in my case this means never knowing what order to do things in or how long they will take), untapped and unexplored creative yearnings, a feeling of wanting badly to fit but knowing I never will, a need to find solitude and space beyond the realms of what others consider “normal”, an intense hypersensitivity to everything going on around me, extreme empathy which means I literally suffer with people as well as feeling sympathy for them, low self-esteem, fear. In more recent years pain from hyper-mobility causing me to use my muscles badly. Uncommon reactions to foods, medicines and other stimuli. Massive emotions that cause me to feel hurt, heartbroken, moved, ecstatic, frightened, offended and traumatised and also highly amused and deeply in love and overpowered by music more easily than most. (I have to stop myself bursting into tears about the big feels of life literally every day. Often just because a sound is beautiful or something happens just at the right time). Absolute terror at any prospect of conflict. Fear of phone calls, fear of unexpected events or visitors, fear of losing people. Massive, massive, massive fear of losing friendships – so massive I don’t fall into friendships easily. Inconsolable sadness and frustration if misunderstood. Crushing pain in my chest and around my rib cage and back as if my heart is hurting lasting days if someone upsets me or misunderstands me. Socialising replay and fallout where I am kept awake by reruns of everyone I’ve talked to that day and then knackered while I try to recover.

That’s just a few things off the top of my head!

So why these reasons?

Because I’m fed up. And I’m sure some people are fed up too.

I just want to get on with my life. I don’t want to keep shrinking my world because people think I’m someone I’m not or I’ve said or implied something I haven’t just because I’m an individual and don’t always have the social energy to explain myself. I’m fed up with feeling people expect me to do life differently from the way I’m doing it and not just loving me for who I am. I am so tired of being afraid. So tired.

I don’t want help, guidance, counselling, drugs, advice, tips, or pressure to conform. I just want to get on with my big feels life and not be judged.

So, my point:

I’m sorry.

I’m sorry if you don’t “get” me. I’m sorry if you misunderstand me, I’m sorry if you think I’ve offended you or not measured up to your ideas of how I should fit into your world. I am genuinely, truly sorry if you don’t think much of me. I’m sorry you can’t see beyond what you think I am based on the way I held myself the last time you saw me or what you think I thought based on my silence the last time you tried to interact with me, or the way my words entered your brain in a different way from the way they left my brain and you didn’t stop to think that it’s not me you should be blaming. I’m sorry if you read my self-preservation as hostility or rudeness.

I’m sorry that because I’m not like you you think I must be faulty or bad or bad-hearted or in need of some kind of fixing.

I’m sorry. I am sorry.

I don’t want a world that is shrunk to tiny because I can’t muster the energy to act for your sakes every day. And yet that’s where I find myself.

I don’t want to keep thinking “Who the heck am I?” because I’m this to you, that to her, the other to him and neglectful to myself. Acting every day in different ways is pretty shattering.

I’m clever. I have a degree. I’ve studied a vast array of subjects. I’m great at research. I fix what needs fixing, I patch what needs patching, I find help for things I think are a fault and learn to love what I know is not a fault but simply my individuality. I had to be very brave and consider others’ feelings from a very young age and I’ve lived this way ever since. I’m always looking at how others are feeling and wondering what I can do and feeling part of you as if we are all joined in some way. I will literally be happier if you are happy and beside myself with worry if you are not.

I don’t expect you to research me. I don’t expect you to completely understand. What I did expect was for people to just realise and accept they simply don’t fully understand me and that was fine – they just shouldn’t judge.

An “Oh! You’re not like me?! Hell, that’s just fine” kind of acceptance would be great.

But people don’t always just accept. They don’t even know they’re not accepting. They look for ways to adjust me regularly because there’s comfort in familiarity and sometimes I don’t always do all your familiar stuff like you’d like me to. Deep down you find it hard to think it’s okay. You know you do.

I’d love it if you could try though.

Do you know how hard I’ve been trying all my life?

This isn’t a call for pity or sympathy. Nor is it navel-gazing, self-indulgence. It’s more of an outward-looking study of human behaviour around those who are not fully understood, and it’s an apology that I can’t not give a flying fig and move on or ignore or just be happy to hate the way some can because I love people and I can’t cope with bad feeling.

I give lots of figs.

So why am I sorry?

I’m sorry that’s it’s not my fault and that there’s nothing I can do about it. I’m sorry that I’m surprisingly happy with the way I am and you’re not so much. No really – I know you think I’m breaking some kind of unwritten rules that don’t actually exist. I know. I feel it. I feel it very well. I am tuned into little adjustments in your approval that you’re probably not even registering yourself. But subconsciously you’re point-scoring me a heck of a lot of minuses. I’m sorry that I have to shrink away from so many of you so often because being misunderstood is so physically difficult as well as so emotionally devastating. I’m sorry that my way of demonstrating caring is different sometimes from your way of demonstrating caring and that you can’t always see that both ways are acceptable. I’m doing big cares in ways you haven’t even thought of and you don’t know you’re breaking masses of my social rules and I’m not even mentioning it or holding it against you.

I’m sorry because there is so much more potential for all of us to be more joined by empathy and yet… and yet…

Well. I’m just sorry I am. Because I feel we’re all missing out.

MELTDOWN: “Greater Force” versus difficult 


“Meltdown” if you’re autistic is the culmination of too much coping, too much stress, too much internalising; too little opportunity for repair, too little understanding, too little time being true to one’s needs.

It’s a powerful rebellion of the inner self, of the true needs of the autistic person. It’s a reaction, a cry for help, an explosion. It’s a need for release from what’s going on now or what’s gone before. It’s an immense sensation that something must give, must break, must end. It can manifest as a strong – if not totally overpowering – need to escape. To rip a hole in this current life and run away.

There is often a sense of a Greater Force beyond our control creating havoc, making life especially difficult and of life conspiring against us.

It’s not a hissy fit. Please don’t say it is. It’s important.

What it really is is an inability to see soon enough that we’re asking too much of ourselves or that others are asking too much of us.

We might react to an immediate environmental or personal impact upon us. We might scream that life or a person is picking on us (it sure as hell feels exactly like that) but what it really is is too much expectation. Too much difficulty. Too much pain. Too much…

Like a belly so overfull it makes you vomit because there simply is no room for anymore, the only thing to do is let it all out or implode.

I see myself trying to carry too much – metaphorically and literally. I watch as I drop things, as I disappointment myself, as I hurt myself, as I become overwhelmed.
I feel a rising tide of everything pushing against me and I rarely remember to stop soon enough – or I am simply not permitted to stop soon enough.

There is no Greater Force conspiring against us.

It’s just too much. It’s too difficult.

But goodness only knows what the answer is.
Another world? Another time? Another set of rules?
Another way of thinking about difference and need?
Some kind of permission for better clarity from autistic people for autistic people and a language based on acceptance and empowerment that allows for difference to be accommodated and embraced is certainly needed; that allows for us to feel safe to say we want change, we want you to change and we want to cope on our own terms. And an end to this feeling that we were not made for this world or that we should try so very hard to not be ourselves when we and the world were very much made for each other.
It’s okay to say it’s too difficult. It’s okay to say your way is not my way. It’s okay to say I have to do a, b or c in order to survive.

But it’s not okay to be in a place of meltdown not knowing that all it was was too difficult, too unsuitable, and we should have been

allowed

to

Stop.






One Thing Only

I went for physiotherapy this morning. The outcome was good (well, better than expected). The physiotherapist is lovely, and I know her well enough to not be too daunted by the mysteries of what to expect. My husband drove me and picked me up and the journey was only 10 minutes. Yet I am exhausted. It took over the whole of today and I’m still replaying and relaying the experience. I worried about it overnight, worried about what I would say, what I would wear, about someone else seeing and touching my body. I am exhausted from socialising and from talking about myself – I find it really hard to take up people’s time and for the time to just be about me. I struggled to get back to normal and complete the rest of the day, to cope with work and parenting and this evening’s mealtime. I just wanted to go to bed at midday and say ‘I’ve dealt with something today!’ And yet to anyone else this is just an appointment amongst many in their diary – get over it. But every other conversation and decision for the whole of the rest of today has been an immense strain and had me close to shutting down. I even said to my husband ‘I’m not sure I can talk to anyone else today.’ 

This is me. One thing dominates and continues to dominate until it is over and I have recovered.  Good or bad. I do my best to keep going but the need to recharge is not a choice. It is a need. It’s how it is. 

Autistic Woman and the Public Persona

I’m out, I’m dressed, I’m bright, I’m smiley. Eyes twinkling with mascara and positivity.

I’m active and alert, acknowledging, nodding, talking. I am efficient. I am cloaked in my efficient persona. I have rehearsed this. I will smile and I will be genuine because I am set up for this.

I’m not fake. This is me. I am real. It is not a mask or an act – but it is an effort and it is only part of me.

The other parts of me are quiet and thoughtful and closed off:

The watchful me, the imaginative me, the creative me; the me that likes to plan and plot and design and reorder and construct and renew and appreciate. The me that needs space away from others to think straight and to survive.

The recovering me, the aching, sore-bellied, groggy me; the me that pushed to make life easier for others and drove herself on adrenaline and internal pep talks and constant alertness to get things right. The me that gets ill because society doesn’t run itself for me. The me that pops beta-blockers in the night to try to cope with all the replay and self-deprecation and the panic about what’s to come and what went before.

The live-wire me, the musical, singing dancing, gardening me; the me who forgets the time, gets lost in thrills and who has a unique surge of productivity that sits so badly with the conventional work day. The me who loves what her imagination and inspiration comes up with.

I am so much that is not bad but that grates painfully up against the social order and that has its own clock.

I will fit. I do fit. I make myself fit.

And then I hide, I curl up, I crawl, I don’t speak. I think and I think and I think.

And then I lengthen and strengthen and stretch towards a life I know I can only take in bites. And boy do I bite it.

And that’s how the public persona survives. Like a symphony of contrasting movements and dynamics and all the rests in between.

Love the autistic woman’s public persona for she has worked hard to perform it for you. But love the whole of her, love the composition and the composer, the way the magic works and the how the best movements are the ones you don’t notice on the first performance.

How to Live a Life

I have been struck by crushing and excruciating exhaustion. Completely floored. I felt it coming and fought it. I shouldn’t have. Now I have to consider each move, each step, each job and each rest. I have to allow myself to surrender. 

Plans? No. None of them. Cancel everything. 

I’m never completely sure what’s going on in my body but sometimes it says “enough” and “no”, and it’s always after trying to act like a regular person, after anxiety, after peopling, after a run of events that other people would find normal but that I find consuming and often scary – or at least worrying – and that use up so much of my thinking. My life, my energy, my brain, my thought process are all geared towards what is expected of me next and I drown in a combination of planning, organising, imagining, visualising, fearing. Downtime, breaks are futile because What is Happening Next is looming on the horizon. Rest can only come when there are gaps. 

Right now I need a big gap. I need quiet, space, peace, open spaces, periods of silence, freedom to move instinctively, a break from expectations, from my own standards. I need to feel security from intrusion. And that includes unexpected noises or things breaking into my safe space.

January is a particularly difficult time after pushing myself repeatedly to be all things to everyone when I’m a person who needs long and regular periods of still and quiet and lost-in-my-head-ness. 

I know who I am and it is not this person. 

Who I am has been pushed to the side, smothered, hidden under a huge pile of “Being Normal”* 

Every wadge of “Being Normal” that is piled on top of all the others I haven’t managed to escape from yet crushes me a little more until I find I am shouting for help. Wanting escape. 

In bed, I am dreaming of intrusion, fear, expectation, of eyelids unable to open, of calling for help, of feeling trapped. 

It’s not that this world was not meant for me or me for it, it’s just that variations are so difficult to live by when they are so poorly absorbed by the latest ideals of how to live a life and my own how to live a life doesn’t suit those who rely on me. 

How much of this is anxiety? How much of this is from years of trying to fit and fighting my real self? How much of this is autism spectrum? How much of this is middle age? How much of this is a commonly-felt dose of post-Christmas, midwinter, light-deficiency tiredness? How much of this is sadness and frustration that I’m still not living the mellow, creative life I’ve always dreamed of? How much of this is ridiculous perfectionism and unattainable high standards? 
All of the above. 
There is a pill. It’s called accepting variations from the norm and absorbing them into society. 

*I use the word “normal” to suggest I and others like me are not normal. But I use it tongue in cheek. We are all human. We are not freaks of nature. Neurodiversity is about the variations within the human and is normal. 

The Eco Whisperer

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I want to be an eco-warrior and stand a-top a mound
Wave leaves and flowers like flags for the earth
And call to all around:

“Don’t kill the animals! Don’t poison the plants!
“Don’t burn trees to the ground!”
“Leave beauty where you see it.”
“Don’t covet all you’ve found.”

I want to fight for truth and hope
Teach sharing, caring ways
And show each human how wanting less will bring us better days

Let’s look past borders, let’s empower the poor
Let’s end this greedy phase
Give hope to future people
And the children that they raise

I want to change the way we teach: setting children on course for greed
Drive minds instead to long term plans
With warnings they must heed:

Give up your ego, give up your bling
Give time to thought and deed
See wealth for what it really is:
Taking more than you need.

For it is our greed that got us here:
Our desire to own and win.
Our minds must change from envy and respect
To avoiding this huge sin.

Quiet, committed thinkers
Are the role models for me
No Bransons, Trumps or Windsors
May ever come for tea

Admire the ones we’ve never heard of
Who never took a dime
Who ask for nothing in return
Though they’ve given so much time.

I’ll never be that warrior
Up high for all to see
I fear for the attention
And the conflict aimed at me
But I will heed my own message
And write for solidarity:

Power to the future
The animals
And the sea
Destroying nature is not progress
And growth?
That’s for the trees.

Red, White and No

I will not judge you if you do not wear a poppy. 
I will not judge you if you do wear a poppy. 

I will not judge you if you wear a red poppy. 

I will not judge you if you wear a white poppy. 

I will not judge you if you wear your poppy with pride. 

I will not judge you if you share your reasons for not wearing one. 

I will be sad for systems that force the wearing of a poppy. 

I will feel sad for those who fear the outcome of their choices. 

I will be disappointed with those who feel they have the right to express anger at others’ choices. 

I will remember that all death in war is tragic, futile and calamitous. 

I will remember those forced to give their lives: certainly, bravely, reluctantly, screaming for home, running in terror. 

I will remember lives blasted away, families ripped apart, generations lost. Mental and bodily health ruined. 

And I will hear the echo of those determined, traumatised souls of the past warning: “Never again. Never again.”   

We must surely remember but we surely must not judge. 

For surely when we judge; when we make no attempt to understand, we sit in different camps like enemies and do battle.

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