Saturday 23 September 2023

Fearing Other People

Almost all my life, I have been afraid of other people.

It started quite young, when I first began to be aware that I was ‘different’ to others, which I interpreted as ‘lesser than’. I had only those around me to compare myself to, and it was obvious that I lacked something, some qualities or understanding of the world, that they had. That I might have other qualities just as good never occurred to me. This was the start of my fear of being ‘exposed’, my inadequacies painfully revealed for all to see.

My frequent social blunders and people’s hostile reactions added to my anxiety. I never knew when the next attack would come, or from where, let alone why such truckloads of disapproval would be dumped on me. In fact the older I got the more expectations it seemed others had, and the more I seemed to make mistakes no matter how hard I tried - and believe me I tried so hard – and thus my fear of other people and their reactions to me continued to grow.

Even after I began to acquire some social skills, or to mask as I’d now call it, I was always afraid of being exposed – because ironically these skills actually seemed to increase the risk that at any moment the mask might fall off, and I would be revealed as ‘faking it’. I was often subtly rejected anyway, but I felt sure that a more complete and utter rejection would follow if the full extent of my inferiority was revealed for all to see.

I think now that I probably had social anxiety disorder during this time. Not that I would have ever admitted any of it to any counsellor or psychologist, for fear of more judgements that would have left me feeling even more inadequate, more stupid, more everything ‘wrong’ and inferior. Looking back now, my tension and anxiety must have been obvious to many, but I think I was probably dismissed as ‘neurotic’ or similar. Some did try to help me, I remember being told to ‘just relax and be yourself’. The problem was when I followed that advice, I got more criticism and hostility, not less. I would withdraw again, more confused than ever. I was caught in a vicious circle of shame, low self-esteem and fear, which led to more shame, lower self-esteem, more fear, around and around.

And then came ‘that’ relationship. As the relationship progressed, my partner made it more and more plain that in her eyes, I didn’t measure up, as a partner, as a woman, and quite possibly as a human being. Nothing I did or said was good enough, and as fast as I ‘fixed’ one thing I’d done or been, another would crop up, the nagging criticism was constant and devastating. I lived in greater anxiety than ever, trying so hard to please, to be and do what she demanded. None of it was enough, I wasn’t enough, I could never be enough, it seemed. My self-esteem plummeted ever lower.

Eventually, of course I burnt out. I gathered up what little strength and shreds of self-regard I had left, and exited the relationship. I was empty, lost, and broken, with nothing to give anymore. I just didn’t have the capacity.

I retreated to live alone in a tiny cottage in the country where I barely saw anyone for days at a time. Combined with being relieved of the pressures and demands of an emotionally abusive relationship, I now had lots of time for self-examination. It was not an easy time, as I finally admitted to myself just how terrified of others I was.

I began piece by piece to unravel and let go of all that terror, a process that in some ways continues today. I had no understanding of what caused that terror, that wouldn’t come for many years more, and I still thought of myself as an inferior specimen of humanity, but I started to not care about other people’s opinions and judgements of me. It seemed to me that they would judge me and criticise me no matter what I did, so what was the point of worrying about it?

Fast forward several years, and the realisation of being autistic. Through meeting other autistics, I began to slowly realise my ‘difference’ was not an inferiority at all, but a unique way of being. It took some time, but my self-esteem began slowly to repair. My fear was slower to decline, but as I grew more confident in my autistic self, it did slowly diminish. More years went by, and I realised that I’m non-binary, aromantic, and probably either demi-sexual, aceflux or something similar; and more recently that I’m almost certainly ADD (without the H). Understanding all of my ‘differences’ has further alleviated my fear and shame. Community was crucial to this, but so was a willingness to look at myself.

And now? I would say that my fears are more of a knee-jerk twitch, an ancient reflex soon quieted. Where it is tangible, it’s more of a pragmatic wariness rather than outright terror. At home, by myself, I can relax. But when I venture out, I’m always at least a little on guard. Some individual or, say, a group over there might be laughing now, but I never know when some minute error on my part means I become a target. (And yes, it has happened.) Better to move on and avoid them. And given I can only recognise potential abusers if they follow a pattern I’ve seen before, it’s just safer to avoid anyone I don’t know, with new people added only slowly, as they prove themselves.

The truth is that I’m still in many ways in retreat from the world. I have no permanent job, no partner, no dependent children, multiple health concerns and little involvement with the community at large, which makes it easier to stay solitary. My main social interactions are online, which I handle way better than IRL interactions. The bottom line is that I still don’t trust the world, or people.

The long years of fear have taken their toll of course. I feel that a lot of my health problems, especially CFS, low thyroid, GERD, IBS and possibly even the diabetes are the end result of all that stress and anxiety. You don’t gnaw on your own liver for decades without paying for it.

I’ve also realised that the flip side of fear is anger. There’s a lot of rage stored up in me, fearing the world has become FTW. Sometimes the anger is focused on a single person (most notably my ex), but sometimes it’s just a more generalised thing. It is, alas, mostly bottled up with little outlet for it, other than creative ones. Another kind of gnawing on myself. I navigate this every day. And I don’t expect anyone who isn’t autistic, or some other kind of neurodivergent, to understand it. How can they? Who can, if they haven’t lived it?

This is the first time I’ve admitted all this publicly. It feels cathartic to do so. Once upon a time, I could never have done it at all. That’s progress, I guess, but the world, and other people, remain the same. I remain the same. It’s only how I deal with it that’s changed.

Friday 18 August 2023


Nearly thirty years ago, during the winter when I was most severely ill with Chronic Fatigue Syndrome, I’d sometimes fall asleep in the afternoon and then wake up at sunset, and become extremely upset, terrified and crying. The overwhelming feeling was that not only the day but my entire life was slipping away into the dark, as if I was dying yet not dying at the same time. I wanted to write, to paint, to just get up and move, but I couldn’t. I couldn’t even read. I couldn’t do anything but lie there, not knowing if I would ever be able to do anything meaningful again. I wondered if my life was already over. If there is a hell, I imagine it to be like that.

Fast forward to now. While I’m not that low anymore, I’m not young anymore either, and ‘Chronic Fatigue’ means just that. There’s never any point where I’m not at least a little tired, and the question is always ‘how much can I push it, and for how long?’ Many people don’t understand the fragility that comes with chronic illness, how a sudden drop in energy can come on you like the blast of a cold wind, how you must carefully hoard your ‘spoons’, figuring out if you have the reserves to do a thing, or will it backfire on you. This has been my reality for so long I’ve forgotten how it was to feel otherwise, and can only marvel at other’s seemingly limitless energy.

And as I’ve grown older, my health conditions have multiplied. Arthritis, low thyroid, Type 2 diabetes, GERD, probable IBS, various inflammations and injuries… the list goes on. I also had Covid recently, which hasn’t helped. CFS however remains the condition that most profoundly affects me. It means that I have fewer energy reserves to battle with my other conditions, and at this point I don’t know if the slow deterioration I’ve been experiencing in recent years is due to my CFS getting worse, simple aging, or if something else is to blame.

Realistically, I know I have maybe twenty years left at most, and it’s anyone’s guess how many of those are likely to be productive ones. I feel the urging, every bit as much as I did back then, to do as much creative work as I can - before I lose the ability to do so again, permanently. This is a big reason why I no longer care about or waste energy on anything or anyone that gets in the way of me being my authentic self, as this is where my creative work originates. Yes, I have important people I care about, but beyond that…. Life’s too short. Literally.

I like to think I’m realistic about what I can achieve. The odds are against my becoming The Next Big Thing in fantasy fiction, for example, or writing ‘THE’ Book On Being Autistic, or even making a living out of writing, let alone getting rich. So I’m not fooling myself, but I need to Do Things anyway, because the alternative is dying feeling like I’ve missed the only chances I have left to achieve anything with the creative gifts I have. And that’s without the creative impulse itself driving me.

But that’s not my only motivation to ‘get busy’ with writing. I look back and want to weep sometimes, how much of my life has been wasted. If only I’d known everything then that I know now about myself, how different things could have been. If only I’d had the right supports, the right understanding, the acceptance that is still begrudged to so many neurodivergents, how different my life would have been. How much more I could have achieved, how many projects I could have completed, books I could have written, paintings I could have done… How I could have known how to look after my health better, let go of anxiety better, got out of toxic relationships earlier or not gotten into them at all, and most especially accepted my neuro-self better…

Pointless, I know, but I can’t help thinking that it could have been all so different.

Because my chronic weariness isn’t just physical, but a weariness of the SOUL. I’m so tired of a world which I constantly jar against, and which continually judges us and finds us wanting, while usually lacking all understanding of what it really means to be autistic. I’m tired of the implicit insistence that ‘neurotypical is best’, when neurotypicals have so many conspicuous lacks and faults themselves. Being NT is not the be-all and end-all of being human that too many still assume it is. It’s a seriously warped and crappy world they’ve created, and it feels like it’s getting worse by the day. When my time comes, I won’t be sorry to leave it, only to leave the people I care about. Yes, I’m angry, but it’s a tired, ancient anger, laced with sadness, with little hope of any resolution.

Anyway. Here I am, in the twilight of my life, and I‘m really not sure where to from here. I still want to make a difference however, and still feel I have something to contribute. Time will tell how much, and in what way. But it’s a primary motivation to carry on with my efforts to get at least *something* done.

Because while it’s too late for me - I’m a damaged soul - if there’s one thing that keeps me going, it’s a determination to try to make things at least a *little* better for those who come after us. If anything I write or do or say helps others not go through the kind of life I’ve had, or to imagine a better or at least different world, then it’s worth it. Because they deserve better. We all deserve, and deserved, better.

Saturday 1 April 2023

On Wanting To Be Normal

Recently I wrote a post on all the ways in which I’m different from the mainstream. It’s made me more aware than ever of the whole concept of ‘normal’.

I know that there are many, too many, autistics out there who don’t want to be autistic. Who just want to fit in and be ‘normal’. I don’t agree with their stance, but I can understand why.

If you’re a young person who’s spent their whole life having it drummed into you that autism is a wrongness that needs to be Fixed, Treated, Managed and Social-Skills-Classed the heck out of you, if you’ve drowned in ‘behaviour plans’, IEPs and ‘special needs’, then of course you would wish you weren’t autistic. There are young adult autistics who refuse to identify as such, or even talk about it or be in contact with other autistics, because they’re so sick of all of that.

And if you’re an older autistic who’s spent a lifetime being put down, criticised, reviled, rejected, side-lined and/or abused for simply being what you are, struggling with co-occurring conditions like Executive Dysfunction or Sensory Processing Disorder, whether you have a diagnosis or not; if you’re unemployed, friendless, maybe homeless, struggling with depression, anxiety and other mental issues or addictions, then you’re not going to see much value in being autistic, and will likely reject the autistic community, think it laughable even.

I also know there are even autistics, both young and old, who support ‘that’ kind of autism organisation and their research into eradicating autism. I feel for them, I truly do, and I understand why they would do this, even if I don’t think it’s a good path to take.

The biggest reason not to take this path is simply this – it can’t be done. It’s gene-deep, brain-deep, neurologically-deep. It’s in your very nerves, muscles and cells. You can’t eradicate it. The only way to ‘rid society of autism’ is for all autistics to die and no more to be born, ie you can only eradicate autistics, not autism. Which amounts to genocide. And even if you don’t think this is a step too far, and/or you’re thinking well at least this would mean nobody would suffer like you have, consider that there are autistics who don’t feel this, who want to be alive no matter how difficult it is, and/or whose parents, family and friends, especially other autistics, very much want them to be alive. And you don’t have the right to decide for them. And that the biggest problem in all the above is actually people’s ATTITUDES to autistics. If that changed…

So my feeling is that we might as well accept it, even embrace it, and maybe even try to make the world a little better for all of us not ‘normal’, or at the very least give a giant metaphorical raised finger to the world, with our being proud to simply be ourselves. Because why the heck not.

In light of all this, I look at my own life, and while it’s been difficult beyond words, and there were long spells when I did try hard to be ‘normal’, I didn’t ever really see that ‘normal’ as anything wonderful. The paradox is that the very traits that make me different from NTs are the very traits that led me to think what the heck is so superior about these people? And this was long, long before I had any idea that I was autistic. This is the other thing at the heart of rejecting wanting not to be autistic – why would I want to be something I didn’t regard as an ‘improved model’, even if they obviously did? So no, I don’t want to be NT.

What about the other characteristics that make me ‘different’? Being gay, for instance? I’m gay/lesbian because I don’t find men attractive. So why would I want to be someone who did? And non-binary – same. If I don’t identify with either binary, male or female, why would I want to be someone who did? Then there’s being an aromantic - if I don’t find romance exactly thrilling, why would I want to? Same with being introverted, why would I want to be one of those noisy extroverts who plague me? You get the picture, I’m sure. It’s all the same paradox, knowing that the alternative is more acceptable to society, but I simply can’t find it an attractive enough state to want to be it.

So in what ways do I wish I was ‘normal’? I think the biggest thing I’d rid myself of, if I could, is my physical disabilities. I’d love not to have CFS, or arthritis, or even an ankle that hasn’t been screwed up ever since I broke it. I’d love to have normal energy levels. To get up in the morning and go about my day, without needing hours to rev myself up to regular speed, because if I rush, I’ll get dizzy, nauseous, sweaty and probably end up back into bed. And that’s on a good day. Bad ones, I likely never get up at all, except to take the pills that help prop me up, eat the foods I need for same, or to go to the bathroom. Bad nights, I barely sleep at all. And the next day or even days, just plain suck.

It would be very nice to get at least somewhat closer to normal than this. But I know it’s not going to happen, that there’s not likely to be a cure for CFS in my lifetime. And also knowing that ageing and lack of fitness have taken away a great deal anyway. Having CFS sucks, but so does getting old.

Another way I’d like to be ‘normal’ is to not be poor. But that’s linked to being physically disabled for so long, and to some extent to who and what I am. I was never good at jobs, and was forced to drop out of university because of CFS – an illness caused at least in part by the stress of attending uni without the supports I had no idea I needed. There are, I suspect, many autistics with CFS or some other stress-related illness or disability, not surprising given the amount of daily trauma we suffer. I’ve made a lot of mistakes in my life, but I think the biggest was forcing – pushing - myself to attempt ‘normality’, that it has harmed me on a very deep level.

In summary then, there’s not many ways I’d want to be ‘normal’, and they are based on things I don’t feel are intrinsic to me, unlike being autistic, gay, introvert, etc. If I could change my financial or physical status, I definitely would. But as things stand, I can’t. So I’m kinda stuck with them.

Being autistic though? I wouldn’t change it for the world. Even when it makes my life very, very hard indeed. I am what I am, and I refuse to apologise for it. And nor should anyone else.

Wednesday 1 March 2023

Floods, Weather and Global Warming

Some of you might have heard of the recent extreme weather events we’ve had in New Zealand, leading to huge damage, destruction and loss of life. I thought I’d give a bit of a background to this.

New Zealand is a ‘wet’ country, with a moderately high rainfall. We’ve also had a wet winter, wet spring, and wet summer, at least in the North Island. So the land was already at its limit. And then one day in January, Auckland got a downpour that was equivalent to an entire summer’s rainfall in a few hours. Mayhem ensued. The soil, and the city’s drainage systems, were simply unable to cope. Flooding, collapsed hillsides, roads wrecked, homes and backyards left uninhabitable. People died. Many still can’t return to their homes, and some will never be able to.

Then there was the more recent Cyclone Gabrielle which also wreaked havoc, especially along the North Island’s East Coast. Even more widespread damage, and the loss of more lives. Whole areas are destroyed. Hawkes Bay is normally prime horticultural land, producing many of NZ’s fruit and vegetables. The country around Gisborne, a bit further north, is also prime grape and corn growing land. Much of it is now metres deep in muddy silt. Crops are ruined, stock have died, houses wiped out. Big farmers cry on national TV when they look at what has happened to their land.

The most productive parts of the East Coast are the coastal river flats. And yes, there were stopbanks, but they either weren’t enough or they broke under pressure of the deluge. Roads and bridges in the area have also been destroyed, adding to the difficulty of clean up, repairs to viral services, and getting supplies in.

There’s also the problem of forestry ‘slash’. For those who don’t know the term, it’s the parts of trees that get trimmed off and left behind by the forestry companies. Because behind the river flats, much of the East Coast is steep hill country, and when the storms come, that slash gets washed down, destroying infrastructure, choking streams and riverbeds, piling up on farms and fouling normally beautiful beaches for tens of kilometres. This has been a problem for years, and the forestry companies are supposed to be cleaning up their act, but not much has changed it seems.

And then there’s that silt. What is it exactly? It’s the filtered loose soil, washed down from the hills by the rain, and left behind when the waters recede. Because what isn’t forestry up there is mainly sheep farms. And anyone who’s ever travelled through that country knows how bare and ‘bony’ the hills look. Barely a tree in sight, except for those forestry blocks. The once-dense native bush that used to clothe them and hold the soil in place has long been cleared. But the towns, orchards, farms and vineyards downstream are now paying the price. Long-term of course, this sediment raises stream and river levels, which will only lead to worse flooding..... And the wet weather isn’t done with us yet.

All of this has sparked talk about things like rebuilding roads to be more weatherproof or further inland or both, ‘managed retreat’ from coastal areas now under threat as sea levels rise and storms get worse and more frequent, building higher and better stopbanks, and replanting hillsides in native bush. The government has ordered an inquiry into the forestry industry. It’s also become obvious that improving/rebuilding city and town drainage systems is essential, especially in Auckland where much of the network is up to a hundred years old, and totally inadequate for modern times.

Now New Zealand is not a stranger to rebuilding after natural disasters, thanks to the Christchurch earthquake. Much of that city is still being rebuilt, and many people there are still traumatised. So we know something of how long it’s likely to take to rebuild not just a city but an entire region. The public and the government know it’s not going to be easy, and that the cost will be immense – and that’s without taking into account the effect on food prices, already skyrocketing post-Covid.

The human cost is likely to be high too. Stress and trauma take their toll, even for those not directly affected. I live in a part of my town that could possibly be flooded if the stopbanks give way in a storm. Every time it rains, I think ‘is this The One? Am I going to be flooded out? What should I pack, what should I take, where should I go, how can I get through this? What am I likely to lose?’ It’s always nerve-wracking. I used to think that a roof being blown off was the worst that a storm could do to me, but now…

Global warming affects us all. We are all vulnerable. Things have gotten very real, very fast. It’s been a wake-up call for us, but what happened here in New Zealand could happen anywhere. Even Australia, dry and often drought-stricken country that it is, has had its share of floods and destruction in recent years. No-one is safe. That’s the message to be taken away from this. No-one knows what’s going to happen. Always plan for the worst.

And know that global warming is going to affect you too, in some way and to some degree, sooner rather than later. It’s here folks, and it’s real.