I’m Scared – Are You?

This is quite a hard post to write. I’m used to being loud and outspoken and angry and sarcastic, or sad, or positive and encouraging.

I’m not really used to writing out how scared I am, in blog format.

I’m terrified.

People around the world are dying in large numbers from this virus. It’s a full pandemic. And the callous attitude of many is really getting to me.

“It’s fine,” they say, relieved, “because only old people, only disabled people, only immunocompromised people are going to die. Everyone else will be fine!”

Thus they blithely wave a large section of the population into irrelevance. They don’t care. They don’t think we really exist. They don’t think we deserve to be alive. They don’t mind that we will die in huge numbers, because we’re ONLY disabled people. They’ll be fine, with their healthy bodies, their youth untouched by years or chronic illness, their immune systems neither unresponsive nor overactive – they’ll shake it off like a bad cold and survive while we die a horrible, painful death of suffocation and pneumonia.

The selfishness of such people is immense. They have descended upon the shops like a Mosaic plague of locusts, snatching necessary supplies out of our hands and hoarding them in ridiculous quantities they will never need or use. My friends desperately need disinfecting wipes to properly clean their mobility aids, yet all remaining stock of such items has been decimated by the viciously selfish and gullibly panicked. Medical supplies actually needed by doctors and chronically ill people have been stolen away by those with more money than compassion. I am sickened, horrified, infuriated to the point of tears by the sheer stubborn refusal of people to accommodate the needs of others even a little bit.

I always knew, somewhere in my mind, that the majority of abled people do not care about us, but this situation has made it so painfully obvious that I feel as though I’ve been kicked in the chest. My friends could very well suffer and die because these people can see only their own fear and have no thought for anyone else.

It’s a truly terrifying time to be a chronically ill/disabled person. I don’t want to die. I don’t want my friends to die.

We have to learn to look after each other, to stop putting human beings in a hierarchy of “who deserves to exist more”. We all deserve to exist! We deserve to thrive! We deserve to lead happy, fulfilling lives in whatever way is available to us. We are a communal species – it’s time we started goddamn acting like it.

Unsustainable

This may come as a surprise if you’re not following my Twitter, but the truth is that I’m angry quite a lot of the time. I’m a happy person at my core, but the world is too full of truly infuriating things for me to just breeze through in a cloud of rainbows and black roses and ignore it all.

Some people will say that being angry is inherently destructive and that it should be avoided, but I have adopted Counsellor Troi’s theory that feelings aren’t inherently good or bad. Anger can be productive, motivating, even cathartic. And on the flip side, relentless positivity can be damaging if it requires you to ignore or gloss over important facts or refuse to deal with problems.

Picture of Counsellor Deanna Troi (Marina Sirtis) from Star Trek: The Next Generation, with the text of a quote from her in the show: “Feelings aren’t positive or negative; it’s what you do with those feelings that becomes good or bad.”

Neither constant rage nor constant sparkly positivity are sustainable modes of existence. If you try to be only one thing all the time you will burn yourself out very fast. Humans are not meant to feel only one emotion forever. We have the capacity for great complexity of feeling and thought; restricting and policing our feelings to a limited palette of “right” or “good” actually harms us and creates cognitive dissonance. Maintaining optimism can help us survive hardship and heartache, and being angry can make us work harder to bring into being the world our optimism imagines. Anger and positivity can work in tandem if utilised properly; they do not have to be diametrically opposed.

The Internet has broadened our horizons and created a connected world in which we can more easily build vast networks of friends and like-minded individuals, share our views and thoughts instantly with millions, and organize groups and events to make good things happen. But unfortunately many of us have used it to become critical, judgmental, inflexible, and mean. Nobody is pure. Nobody is “unproblematic” because we are all fallible human people with things in our past that we may regret. We are each only as clean as the mud from which we have dragged ourselves. In a world that has such a newfound potential for unity, we are fragmented, viciously fighting over important and petty things alike as if there were no difference between them.

Anger is good, but only if it motivates for good. Optimism is good, but only if it achieves good.

It’s not what you feel, but what you do with that feeling.

And sometimes you need to take a break from all of the intense emotions and just breathe, in and out. Sometimes that is the most productive and useful thing you can do in that moment. The instaconnection we have at our fingertips means that there is never any shortage of news items, celebrity behaviours, and “bad takes” to get riled up over, nor of people clamouring to tell you that you must feel something, do something, say something about all of it, otherwise you are complicit, a terrible person, as bad as the perpetrator of the latest public crime. This too is unsustainable. You need time to recharge. You need time to breathe, time to think about your own life and your own family and your own desires and goals and hopes and struggles. Time to simply exist.

Taking in the moment in which you live, breathing in the smell of your neighbour’s wood fire as its smoke curls from the chimney or the scent of your chai latte, absorbing the crisp winter chill or the warmth of the sun – all of these are important too. They are feelings, emotions, evocations of a world that is so much bigger and more beautiful than we even realise. And sometimes they are what we need to replenish our failing batteries, drained by the constant swell of information and fear that rushes in on us every other minute. Do yourself a favour, and take a breath.

Wrap yourself in your favourite fluffy blanket and feel each soft fibre as it comforts and warms you. Light a candle and watch the tiny flame flicker and dance to every shift in air motion. Take a relaxing bath and let the accumulated tension slip away from each individual muscle. Listen to music that calms and uplifts your soul and sends a shiver of sensory appreciation across your skin. Kiss your partner and lie with your head on their chest, listening to the reassuring thud of their heartbeat. Do something that makes you feel alive.

Rest.

The battle still waits for you tomorrow.

Image: a mug of tea resting on a stone balcony looking out across a forested valley, with interlocking mountain spurs rising on each side, covered in mist and dark green trees.

The Stubborn Taurus Guide to Accepting Help

I’m a pretty stereotypical Taurus. I like comfort and safety, I love scented candles and fluffy blankets and velvet clothing, and I’m as stubborn as the bull that represents my sign. I’ve always been ferociously independent by nature, and I’ve always known exactly what I wanted, right from when I was a tiny two-year-old trying on shoes. My anxiety and the emotional abuse I’m still healing from have mellowed my decisiveness too far the other way to the point where I’ve been self-effacing for years and struggle to make decisions that involve or impact other people in even minor ways (hello, yes, I will spend two hours Not Deciding what to have for dinner in case the other person will be unhappy with my choice), but if it’s a decision that impacts only myself, I am extremely single-minded and usually get what I want through sheer determination and strength of purpose.

Unfortunately, life has conspired to make it very difficult for me to maintain the level of independence I would prefer. Strength of will helps when you’re chronically ill, but it can’t heal you or make you magically able to do things when your body just point-blank refuses to cooperate. In fact, it can even end up doing more harm than good.

I’m known among my friends and family for being incredibly avoidant when it comes to asking for, and accepting, help. The first winter after I left home, I was dirt poor. I was living on a truly abysmal diet of bran flakes (Tesco, 69p per box), milk (Tesco, 80p per 2 pint carton), and tinned rice pudding (Asda’s own non-branded version, 37p per tin), with the occasional apple or carrot for some actual nutrition. I was walking at least 3 miles per day between my house and the bus stop to get to university, often in rain and wind because England. My shoes got holes in the bottoms. I kept getting sick. It was horrible. But such is my horror of becoming a burden that my then-boyfriend had to practically fire up the thumbscrews to get the truth about my situation and convince me to accept monetary help from him.

Fast-forward 3 years: having moved across the world and completely burned myself out at university in the USA, my chronic illnesses have grown exponentially worse and are significantly impacting my life and ability to do … well, everything. I am finally having to admit to myself that there are many things I just can’t do anymore, and even more things I can’t do without help of some description.

I recently “caved” (see how I’m still framing this as some kind of concession or failure? It’s not a failure. Don’t be me) and bought a cane because I was finding it extremely painful and difficult to get up and down the two flights of stairs to our apartment, as well as struggling to walk and stand for anything longer than about 20 minutes. I wish I’d bought it months ago. It’s absolutely magic. Also it’s really cute because it has a metallic red rose pattern on it and I love it! (see picture 1)

Even more recently I finally allowed myself to use a motorised shopping scooter with a basket attached, in order to avoid being in huge pain at Walmart. (see picture 2) Again, I wish I had let myself do this before now. I held out, believing I could essentially grit my teeth and blag my way through the pain and danger of subluxation, but I should have just let myself accept the help.

I want other people not to make the same mistake I’ve been making all this time.

This is my Stubborn Taurus Guide to Accepting Help:

 

• Make sure you’re fighting the right things 

Fighting is important for some things, but if you end up fighting your own body all the time, fighting your limitations instead of learning to accept and work around them, you’ll damage yourself both physically and emotionally. Pick. Your. Battles. This also goes for not fighting the people trying to help you. Don’t push away your support network because you’re too stubborn and scared to let them be your safety net. They love you. Honest.

• Try not to see accepting help as a failure or a weakness

You’re human, the same as everyone else. John Donne said “No man is an island entire of itself” and it’s true. Giving and accepting help is part of being a community-based species: it’s what we do. There should be no shame or stigma attached to needing help.

• Your new mantra is “I am not a burden. I deserve to exist in as much comfort as possible.”

When you’ve learned that independence is the only way you can survive and maintain your self, the idea of being a burden if you ask for help is very hard to overcome. But the truth is that you are not a burden. Life is meant to be lived. You don’t deserve to be in unnecessary pain or privation. You deserve to have nice things, and you have intrinsic value as a living human.

• Find practical ways to make positivity easier 

This is a tricky one. I am definitely not an advocate for toxic positivity culture, where everything has to be sunshine and flowers 24/7 or you’re somehow a terrible person. Chronic illness sucks, frankly, and it’s not helpful to refuse to acknowledge that. HOWEVER, you can do little things to help make it easier to accept help – like finding a cane with an aesthetically pleasing pattern, for example. Chronic illness does suck, but it doesn’t have to be all doom and gloom.

• Learn how to tell judgmental people to f*ck off

This one should come fairly easily to the Stubborn Taurus – but in the struggle to learn how to accept help, it’s important not to lose sight of the fact that a) not everyone means well, and b) even well-meaning advice isn’t always good or useful. Sometimes you have to conserve your energy and tell people to f*ck off (either literally or metaphorically. If online, judicious use of the block button is advised. Real-life interactions can be more complicated.)

 

As always, this is a work in progress for me as it will be for you. I am still learning how to apply my own advice, and some days it’s harder than others. But it’s worth the effort.

If you have any other points to add to the Guide, let me know in the comments!

 

Picture 1 – My fantastic cane! 

Picture 2 – The scooter is a Good Friend. 

 

What Is a Writer? and other impostor-syndrome stories related to chronic illness

CW: Medical issues, reproductive health, blood mention

So, Where Have I Been?

You may have noticed that it’s been quite a while since I last posted here: nearly a whole year, in fact. Shortly after writing about the history of chronic pain treatment, I was struck down by a massive flare-up of my own chronic illnesses for around 10 months. I’m sure there’s a joke in there somewhere, but I’m too tired and annoyed to bother finding it.

I was fighting almost constant anaphylactoid reactions from April through to October, and just as the pollen season died down and took my furious mast cells with it, my PCOS flared with a vengeance. I bled heavily from the end of October to the beginning of January with almost no letup whatsoever. I was genuinely afraid for my life. The pain, weakness, lightheadedness, and brain fog were among the worst I’ve ever experienced.

I am finally getting myself sorted out with use of the progesterone only pill, but that’s coming with its own set of problems – it is exacerbating my connective tissue disorder and causing me a lot of pain and trouble with walking and subluxations. When you have multiple co-occurring chronic illnesses you sometimes have to choose the lesser of two evils, and for me the increase in pain and subluxations was worth it to not, you know, die from anaemia.

[For further information about my “constellation” of disorders (some diagnosed, some as yet unconfirmed by doctors), definitely check out the wonderful Oh TWIST! ]

Impostor! Impostor!

One of the more annoying results of all this health mess is that I have barely been able to write anything for a year. Extreme exhaustion, pain, and brain fog are not conducive to any kind of writing. But if I’m brutally honest with myself, the biggest hurdle in getting back on my feet as far as writing is concerned has been my own doubt.

I always thought writing was in my blood, but when your blood is disappearing from your body at an alarming rate and just thinking about what you want for dinner feels like trying to do an Olympic sprint through a treacle bog, you start to question everything. Even when the worst of the flare-up had died down, I didn’t feel like I could call myself a writer anymore. I hadn’t written anything in months! My Twitter friends and followers were extremely kind and helpful when I sobbed all over the Internet about my loss of creativity, but despite their positive, comforting words I still felt like a fraud. Some writers talk about inspiration not mattering as much as dedication and work, but what about when you don’t have the capacity for either? I was convinced I had lost my touch entirely and would never be able to write again.

Some of my friends pointed out that Twitter threads surely count as “writing” (and of course they were right), but my brain wouldn’t allow that because I hadn’t touched any of my various WIPs or my blog in months. My fanfic readers probably think I’ve gone back to my home planet or something.

Of course the actual pain and sickness and fear were the worst part of being severely ill for most of a year – of course they were – but at the same time one of the most difficult things was the constant feeling of slowly losing parts of myself. I could feel my energy, my creativity, my desire to do things just … trickling away, as if my brain and body had become an unplugged sink through which my whole self was draining into oblivion. When you lose the things you love about yourself, who are you?

 

Miles to Go

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

– Robert Frost, Stopping By Woods on a Snowy Evening

The road to recovery is a lot like trudging up a snowy hill. Sometimes you’re making good progress and then there’s a hidden patch of ice and suddenly you’re not as far along as you thought you were. This is especially true of chronic illnesses, because even if the bad flare-up has died down, you’re still not well, and “getting back on your feet” can look a lot different to when an abled person has been ill and is recovering.

It can be very tempting, as Frost writes, to just stay where you are, lulled by the silence into a kind of trance. The uphill climb is so difficult and the snow is so pretty and there aren’t any people to bother you. The darkness is alluring. But the problem with staying still is that you freeze to death eventually. Stagnation means a slow death, creeping infinitesimally toward the dark even without you realizing it.

You can’t know until you try. With the caveat that I’m not recovered but still recovering, I have to speak from my own experience and say that you just have to give your creativity a chance to come back. Don’t force it, but don’t deny the tiny flashes you have. Let them come naturally, organically, and listen to their small, bright voices. The snowy hill may always be there, and you may have to reconcile yourself to never actually reaching the top, but you can admire and enjoy the individual snowflakes as they fall, without stopping too long and freezing your feet to the ground.

It’s a struggle, but then isn’t that life and art all over?

 

 

[Image credit: SamuelFrancisJohnson on Pixabay]

Burn, Baby, Burn – Autistic Inferno

This week in #TakeTheMaskOff we are talking about Autistic Burnout.

When I was 22 I went to college and did really well. I was getting high grade after high grade, making new friends, learning about myself as well as my subjects, and everything was fantastic. And then, halfway through the year, I started to fall asleep at my desk. I slept all the time even when I was supposed to be studying. I fell asleep in my favourite class. I slept in the break room propped up on the table or hanging off the end of the minimalist (read: extremely uncomfortable) royal blue two-person sofa. To the consternation of my family, I went to bed early every night, slept in late at the weekends, and starting having midday naps whenever possible. My stress levels rose even higher than they had been in the past six months, but no matter what I did, no matter how much I slept through, I could not shake the feeling of utter exhaustion. It felt like I was trying to wade through cooling tar. Then I blacked out and fell down the stairs.

I went to the doctor, who for some unknown reason decided that I was suffering from a mystery virus (even though I didn’t feel ill as such, just exhausted and dizzy), and gave me a sick note to explain why I needed extensions on some of my papers. Somehow I staggered through the rest of the school year and emerged battered but triumphant, clutching my pile of A grades.

I was high on adrenaline from success, I suppose. I was fine for a few months, and then my anxiety, exhaustion, and agoraphobia returned with a vengeance. I couldn’t cope with being around people more than an hour or so per day. I spent 90% of my time hiding in my bedroom, too tired and overwhelmed to do more than my assigned chores around the house (cleaning, cooking, and laundry) before disappearing into my sanctuary again. I had burned out back in the January, but had forced myself to keep going and therefore ended up so badly burnt-out that I couldn’t even leave the house. I slept, again, so much that my family grew alternately concerned and annoyed. I couldn’t find work although I was honestly trying hard to do so. I don’t know how I would have managed if I had found work, so maybe it’s fortunate that I didn’t until nearly a year later.

My point is that it was never recognized for what it was. It was called anxiety, depression, laziness, stubbornness, “not-trying-hard-enough”, and numerous other names ranging from the inaccurate to the insulting. While it’s true that I was both anxious and depressed, I firmly believe that what I experienced was autistic burnout. My world, both external and internal, had undergone vast paradigm shifts in that year, and added to the physical and mental exertion of going to college (another new thing for someone who had never set foot in a school before) and writing twenty-one papers in nine months, the result was an exhausting cocktail of effort and confusion and new experiences. My brain and body attempted to shut down for self-preservation, but I forced myself to ignore their protests and succeed because I was desperate both to prove myself and to gain some kind of academic qualifications.

Autistic burnout is not a buzzword. It’s real, and it can be debilitating. It’s very important to try to take regular time-out from the things that overwhelm you. Regular rest and proper relaxation – in a way that makes you relaxed, not necessarily what other people suggest – can be the pressure valves that help you not to burn out.

If you do burn out, try not to force yourself to carry on with your normal routine. Your body is telling you something and you must listen to it. Take time to heal and be nonverbal if you need to be. Try to set boundaries with your family and loved ones (if at all possible) and help them understand that you need the space and quiet and rest in order to recuperate.

Don’t forget to reach out in any way you can to the warm and helpful autistic community online. Having friends who truly understand what you’re going through is one of the best ways to start healing from damage and burnout.

And most important of all, remember that you are not broken. Damaged, perhaps, but you are whole and you are absolutely unique – and that is a beautiful thing.

 

The Unholy Trinity: How a Trifecta of Circumstances Shapes a Survivor

 “They f**k you up, your mum and dad.

 They may not mean to, but they do.

 They fill you with the faults they had

 And add some extra, just for you.”

                                           – Philip Larkin, This Be The Verse 

First of all, I’m not writing this for sympathy. I’m writing this because I think it’s important for others who may be in a similar situation to see that they are not alone, and for those who may not realize they are in a similar situation to start to open their eyes and notice what’s going on.

In #Exvangelical circles it’s well-known that spiritual abuse and emotional/physical abuse often go hand in hand. There are many flavours of fundamentalism and evangelical religion, and some of them are more hard-line and shocking than others.

The worst of both worlds is when you are brought up not only with fundamentalist conditioning but also with emotionally (and/or physically) abusive parents. These are two parts of what I call the Unholy Trinity, which requires:

1. Fundamentalist/cult programming
2. Abusive/narcissistic parent(s)
3. A personal ‘difference’ unique to yourself and misunderstood or disapproved by the religion and/or family – this can be sexual orientation, mental illness, neurodivergence, or even something like a strong desire to learn academically

These three things together create a trifecta of problems for children brought up in – not to put too fine a point on it – cults or cultlike religions. However, they can also help to create the circumstances in which a victim becomes a survivor and even an escapee.

Programming teaches you to obey without question, to give respect and honour to authority figures purely because of their position, with no regard for their behaviour or whether or not they deserve to have such accorded to them. It teaches you that you are at the bottom of the food chain, that you have no right to demand anything, that you are foolish and ignorant and cannot trust even your own instincts or logic. It teaches you that authority figures always know what is best for you, and that defying them or questioning them leads to terrible consequences. It teaches you that no matter what anyone else says or does, the authority figures in your life must be obeyed, and that they know you better than you know yourself. If they tell you that you are weak, that you are ignorant, that you are incapable of making decisions for yourself, that must be true – even if you are internally convinced that you are none of those things. It teaches you that God is always loving, even when his love looks like abuse. It teaches you that men are in charge because God put them there, even when they are incompetent and bigoted. It teaches you that you are small and insignificant but that a great and almighty deity somehow still requires your worship to bolster his ego. It teaches you that a life spent doing anything but worshiping this deity (in the exact way his self-styled spokespeople prescribe, of course) can only be futile and joyless and leading inevitably to eternal death. It teaches you that people ‘outside’ are evil, selfish, lacking any kind of love or good motivation, and that you are always better off ‘inside’ no matter what happens to you.

Abusive/narcissistic parents teach you that you are worthless, that you are broken, that you cannot survive without them. They teach you to fear the world outside as a place that will chew up and spit out a person as delicate and naïve as you. They teach you that they alone (well, probably God too) know your heart and soul, that they deserve to be told your every thought, that your mind is not your own. They convince you that you are incompetent, broken, and that your only hope is to stay with the only people who truly understand you (hint: that’s them) or risk being thrown aside by everyone else once your true nature is discovered – a weak, useless person unlovable by anyone except blood relations, who have to love you because it’s obligated. They try to tell you that your friends don’t really care about you and are only hanging around with you out of some misguided form of pity. Given a choice of course they’d rather go and be friends with someone else, someone more interesting, someone less pathetic. Either that, or they are actively deceiving you for nefarious purposes – wanting to use a painfully naïve, stupid person for their own devious ends. The message in either case is: your friends are not your friends. You cannot trust anyone except us (and God).

Personal difference gets you noticed for all the wrong reasons in this already toxic environment. You’re clumsy and have difficulty processing instructions (stupid and disobedient); you have an unfortunate tendency to be attracted to the Wrong People (sin); you feel overwhelmed with depression and anxiety (lack of faith); you have a strong desire to learn and succeed academically (pride, arrogance, and danger) – whatever it is, you are constantly fighting it, being told that it’s a failing, a sin, a dangerous road to go down, a slippery slope to unimaginable horrors.

However, all is not lost! Sometimes your personal differences conflict so much with your programming and abuse that you begin to see the holes in the net surrounding you. The carefully built world of unquestioning obedience slowly begins to crack open. When faced with clear contradictions between reality and what you have been taught, your brain begins to deal with cognitive dissonance – the two voices fighting with each other inside your head, logic and reason battling repression and conditioning.

Some, sadly, never get past this stage. They learn to block out the voice of reason in favour of maintaining the status quo. Sometimes this is because it’s (weirdly) the easier option, and the human brain is notoriously lazy when it comes to the easier option. Fighting is hard work, and in this case often painful, especially when you add in the weight of family and community expectations and the abuse and hurt that come from pulling away and going against what you’ve been told.

For some, however, the battle between logic and conditioning is the catalyst for change. Learning to trust your own instincts can be hard, but it is very much worth the struggle.

Most importantly, you have to learn to take things at your own pace. It’s easy to get discouraged by apparent setbacks. Abusers are excellent at teaching you to gaslight yourself without their help, and it can take a long time to free yourself from the effects of their conditioning. But it’s vital not to despair! Try to view your setbacks as stepping stones instead of precipices. Learn your own limits. Conditioned/abused people often have a history of breaking themselves trying to live up to the limits imposed on them by others. One of the biggest steps to freeing yourself from your past is laying down your own boundaries and limits, and sticking to them no matter what.

You will feel guilty. You will feel selfish. You will relapse into believing you are a terrible person.

None of these things is in any way true.

You are your own person, and you have the right to set your own boundaries and refuse to go beyond them. This does not make you selfish. Society and our abusive pasts have gaslit us into believing that refusing to oblige anyone ever is a sin worthy of death. In reality it is unreasonable and cruel to expect a person to ignore their own limits and boundaries to oblige everyone in their lives. There comes a point where a certain degree of ‘selfishness’ is essential to your health and well-being, both physical and mental. Self-care is something that is often denied us, or discouraged at the least. Building healthy, regular self-care routines can help you to strengthen yourself and learn where your limits are.

You will learn over time that everything you have been taught about yourself and at least 90% of what you have been taught about the world around you is false. After you survive your first few months out of the cycle of programming and abuse, you start to come out of your shell, as it were, and realize that you’re still alive, that the apocalypse didn’t come, and that God did not take time out of his no doubt packed schedule to aim a personal lightning bolt at your head. You will cautiously start to assess the situation and try things that a few months before would have had you running for the hills. This is both a wonderful and very vulnerable time for you. Learning to ignore the paranoia that has been carefully wired into you over years can be tough and may take longer than you would like.

However, the resilience that you have had to build on to survive is a powerful force. You are far stronger than you know. If you are reading this and it resonates with you at all, know that your strength is far greater than any abuse and any pain that you have been through. You are here, and alive, and that is amazing! Now all you have to do is try to convince yourself of that…

 

 

 

Dancing in Public: Bal Masque

Masquerade! Paper faces on parade

Masquerade! Hide your face so the world will never find you …

Masquerade! Seething shadows, breathing lies

Masquerade! You can fool any friend who ever knew you!

– Andrew Lloyd Webber, Richard Stilgoe, Charles Hart and Alan Jay Lerner, Masquerade (Phantom of the Opera)

I mask a lot. My life as an autistic woman has been pretty much one long masquerade ball, a promenade of paradoxes. I was good and quiet and well-behaved, but I was also a chatterbox and a live wire and hyperactive. I was blunt and opinionated but socially anxious; I was clever but I was stupid. I had to mask my intense fear of rejection and failure and social events in order to keep my family happy. I had to mask my identity in many ways, not just my neurotype but my sexuality and my real desires in life, for my future and my happiness.

Now, free from the worst repression in my life, I still find myself masking sometimes, because it’s so ingrained in my psyche. I will rarely say no if you ask me to do something. I will efface my own wishes in favour of yours because it’s ‘polite’ and I can hear my mother’s voice in my head: “Don’t be pushy and demanding, or you’ll never have any friends.”

I apologize for knowing things.

Sometimes (more and more rarely now) I will pretend not to know things, so that I won’t get into trouble for knowing them and making you feel inadequate with my own intellect.

I dance in public now. I conduct a hundred invisible orchestras with the twirl and twist of my restless fingers. I do not care if you stare. I will dance, I will sing, I will stim and laugh and be myself. But every now and then the anxiety creeps back in. I blush, I stop, I hide my hands.

“What if people think you are silly?” says the voice in my head. “What if they don’t like you because you are weird?”

“Don’t be such a child!” says the other voice, the one that sounds like my mother.

But being ‘childish’ can be so much fun, so liberating! Who decided that adults can never be free or have any simple enjoyment in life?

I am autistic. I am not a child. But if singing in the street or conducting an orchestra through the pasta aisle of Walmart makes me childish, then I’m afraid responsible adulthood might be a lost cause.

And you know something? Maybe that’s not such a bad thing. Maybe the true gift of autistic people is in showing the rest of humanity how to live again.

#TakeTheMaskOff 

What I Tell You Three Times is True

Lewis Carroll is generally known more for his bizarre jaunts into cleverly written psychedelic fantasy than for deep psychological truths (despite being a logician, mathematician, and philosopher of some note in his day), but one line in his poem ‘The Hunting of the Snark’ stands out as weirdly fundamental to the human psyche. “What I tell you three times is true” may or may not have been intended as an incisive understanding of human perception, but the fact remains that we are susceptible to repetitious teaching. If someone in authority tells you something frequently enough, you start to believe it. Of course, if you subsequently find out that it is not true, you begin a whole painful, complicated process of cognitive dissonance and what is known as ‘deprogramming’ – but I’ll get to that later.

This post is not really about the wit and wisdom of Charles Lutwidge Dodgson, though that certainly bears discussion – I may give him a post to himself at some point – but about the effects of emotional and psychological abuse on the self-perception of the survivor.

Yes, I said survivor, not victim. Coming out the other side of abuse means that you have to work to overthrow the effects, and that includes re-creating yourself in your own image. To be a victim bears the connotations of helplessness, depression, and lack of agency or control. A victim has their control stripped away from them by the abuser. To be a survivor, one must take back the control that has been stolen, and become a stronger person, psychologically speaking, than the aggressor. I will therefore here use the term ‘victim’ only when talking from the abuser’s perspective, and ‘survivor’ otherwise.

 

Firstly, I should point out that abusers do not always perpetrate abuse through active malice or hatred. Some abusers, especially caregivers (I will be speaking partly from experience here, so will mainly deal with caregiver-abuse in this post, though this applies to other types of relationship-abuse too), truly believe that they love their victims and are doing everything ‘in their best interests’. They tell themselves this pleasant, conscience-appeasing little mantra until they believe it, and anyone who tries to shake that belief will be met with a barrage of vicious emotional retaliation. The abuser will take the high ground and project their own true motivations onto the accuser without even being aware that they are doing so. Failing all else, they will fall back on the comfortable assumption that they know their victim best, and that therefore nothing anyone else says can have any possible bearing on this particular situation. This allows them to do two things:

1. Feel good about themselves (I am a righteous warrior for my child/ward)
2. Ignore everything that is said to them and place blame on the accuser (They don’t know what they’re talking about, they don’t know my child/ward like I do, they’re trying to separate us, they’re malicious, etc)

This is a self-perpetuating cycle. The more they are accused of hurting the victim, the more they tell themselves that they are in the right and that everyone else is either imagining things or actively lying. From this we see that even repetition of false information inside a person’s own mind is capable of cementing belief even when the reality of the situation is blatantly obvious to onlookers.

Now to the really difficult part – the repetition of belief does not stop inside the mind of the abuser. In order to keep the victim under their control (which, don’t forget, is often the way they believe the victim will be kept safe) they must create a reality that extends beyond their own belief. Already accustomed to the process of repetition-belief-truth, they use this same process on their victim. Especially when the caregiver is a parent abusing a child does this process work most efficiently. A child is genetically programmed to receive their most basic knowledge of the world from their parent/s in their formative years. A child who grows up with psychological abuse has no point of reference from which to challenge the concepts and beliefs they are being conditioned to accept.

As the child grows up, the caregiver understands only too well that their days are numbered as regards direct influence (in abuser-belief-speak this translates to “I have only a few more years to directly protect my child”). In order to keep the control for as long as possible, they resort to twisting the child’s inner understanding further and creating an entirely false self-perception in the victim.

Example #1:

A young teenager is told on multiple, frequent occasions that they have a “bad attitude”, that they are “defensive, insolent, angry, and hurtful” when they are not behaving in the exact way their abuser wishes. As the teenager reaches adulthood, this belief becomes deeply ingrained. Whenever they are not actively happy and cheerful they feel that they have been bad-tempered and hurtful to people around them. As a mature adult they often apologize to friends and lovers for being “angry” or “grumpy”, only to find that those around them have noticed no such behaviour.

Example #2:

A child is constantly told that they make mistakes “all the time”, and as they grow this continues and increases until they become convinced that they are “useless”, “hopeless”, and incapable of surviving in the world without the ‘help’ of the abuser, and even that nobody outside of the caregiver-relationship will ever truly understand or love them because they are so “difficult” and incompetent as a person. This exacerbates their anxiety until they become agoraphobic and depressed.

 

The self-perception of the survivor must undergo a fundamental change once they break free from the cycle of abuse. This includes learning to listen to the people who truly love them.

If your loved ones (post-escape) tell you that you are not a bad person, that you are not hurtful or angry by nature, you must learn to hear and take on board these new truths. Recognize that you have the right to re-create yourself as a survivor. This will be a long and difficult process, and sometimes extremely painful. It is hard for a person to come to realize that almost everything they were conditioned to believe about themselves is untrue, a reality woven by an abuser to keep them under control and not question their need to be ‘looked after’ and ‘helped’.

“What I tell you three times is true” might be How to Abuse Your Child 101, but it also works in reverse. As a survivor of emotional and psychological abuse, you need to write your own, new mantras. Tell yourself you are not a failure or a victim any longer. You are strong. You are complete. You are a good, loving person with huge potential. You are important. You are loved. You are you.

Deprogramming from conditioned abuse can take years. I’m not going to sugarcoat this. But there is always hope as long as you keep telling yourself the truth – that you are capable of winning, and that you deserve to win.

Gothic Heroines, and other Stories

 

Recently I have been re-watching Criminal Minds. While I am fond of the show, mainly for the characters on the team, I can’t ignore the many egregious issues it has with writing and characterization of its ‘unsubs’. I can’t deal with all of them here, but in this post I want to talk about two in particular that hit home to me.

1) The Goth as Unsub.

This isn’t unique to Criminal Minds – the idea that people involved in the gothic lifestyle and subculture must be depressed, angry, sad young people whose lives are going nowhere and who will inevitably end up hurting themselves and/or others. I find this commonly held belief not only obnoxious but ultimately harmful to the goth community. Here’s why:

After Columbine, the public wrongly connected gothic lifestyle and fashion choices with mass murderers. This response made life even harder for those who didn’t fit into mainstream culture. Parents became paranoid about their children’s preferred style of clothing, makeup, and music – usually unnecessarily.

Reinforcing stereotypes of the goth as a damaged, vulnerable, or dangerous character propagates the belief that everyone needs to be the same in society. Those who don’t fit in are penalized and bullied for being unique and having their own style. This is a subject dear to my heart as an autistic goth, so no I can’t say I am totally objective here – however, I am also speaking from experience. Most goths with whom I am acquainted are cheerful, interesting, successful people with a rich inner world and a great (if dark) sense of humour. To insinuate that these people are likely to commit crimes is really very irresponsible. It leads to the erroneous belief that one can instantly recognize a criminal, a murderer, a terrorist, simply by the fact that they are socially anxious and don’t blend in with their peers. This, in general, could not be further from the truth.

One must ask oneself why TV shows and books need to scapegoat people who are different. The fact is that people don’t like goths, for much the same reason that they don’t like autistic people. We make them feel uncomfortable. We unsettle and offend their pleasant little assumption that everyone in the world is exactly like them. They do not like to imagine that anyone who looks, acts, or sounds different is capable of being just as successful at life as they are – and often more so. I will provide two examples of goths in the public eye who smash the stereotype – one from fiction and the other from real life.

Abby Sciuto from the show NCIS is a beautiful and outstanding example of how goths can and should be portrayed in popular media. Played with great charm and effervescent energy by Pauley Perette, she is a dynamic, happy character who is extremely good at her job, and builds strong and deeply affectionate relationships with her work colleagues.

In real life, Dr Janina Ramirez (who happens to be one of my greatest celebrity crushes and a personal heroine of mine) is a wonderfully enthusiastic cultural historian and TV presenter. She is friendly, kind, and unbelievably knowledgeable, and has a megawatt smile that can knock you sideways.

While it’s true that many goths are first attracted to the style and culture during periods of intense emotional upheaval in their lives, it absolutely does not follow that all of us are depressed, morose, angst-ridden, or violent toward ourselves or others. This sort of stereotyping must end if the human race is ever to learn how to accept diversity in society.

Which brings me to my second point.

TW: Self harm, suicide (below the line)

---

2) Self Harm Leads to Harming Others (as a plot point)

This really bothers me. Most people who have self harmed will explain that it has very little to do with actually wanting to hurt oneself or others. It’s a form of nervous release, a calming and cathartic process. There is usually not much violence intended. Even those who are intentionally violent to themselves almost never harm others. Self harm, is, in effect, the opposite of hurting other people.

But media constantly connects self harm with danger to the public, and this is horribly damaging to people who suffer from anxiety disorders or other issues that make them self harm. There is already enough stigma attached to mental illness and neurodivergence. How likely do you think a young person will be to reach out for help if all they see of self harm on TV is when it appears as part of a profile for a murder suspect?

How likely will they be to admit that they need support?

And, conversely, how likely do you think they will be to feel so completely alone and persecuted that they will consider a more permanent form of release from pain and distress?

Suicidal ideation is very common in people with anxiety and depression. This absolutely does not mean that they are bound to attempt or succeed at committing suicide, and even less does it mean that they are likely to kill someone else. Society has this peculiar moral slant on suicide that views it the same way as murder. It is not the same. One’s life is one’s own. Is that not the basic principle of human free will? To do as one chooses with one’s own life and body? Suicide, an act of supreme desperation and despair, should never be viewed in the same light as willful murder of another human being. And yet time and again we see ‘a danger to self and others‘ being trotted out as a catch-all phrase.

When I was at my lowest emotionally, self harming and attempting suicide, I never once thought about hurting anyone else. I wanted to relieve both myself and others of the burden that I felt I had become. To place me in a category of people who deliberately plan the brutal deaths of others is an insult to my entire being.

I will say it again, louder for those who don’t like hearing it –

Self harm and attempted suicide are not indicators of violence toward others.

Please, we have to stop looking at people who need acceptance, love, and support, and vilifying them as sick monsters who will end up hurting others. It is neither correct nor fair to do so.

Counting Steeples

When I was a child, I possessed the magical ability to fall asleep as soon as I got into bed and sleep like the dead right through to the morning, when I would wake up bright and early full of life and zest and bounce.
Then puberty happened, and with it some pretty horrendous health issues, and the long and the short of it is … I suffer with periodic, chronic insomnia. Half the time I can’t sleep until 2 or 3 am, and then the other half of the time I’m frantically catching up on lost slumber and sleeping like Briar Rose for a thousand years (ok, ok, actually more like 12-14 at a time).

I think part of my problem lies in not being able to shut my brain off when my body is tired. Something is cross-wired in there, and my poor body can be screaming at me to just shut my eyes and damn well go to sleep, but my brain will be merrily running on at warp speed and refusing to listen.

College is wonderful, but (there always seems to be a but and I’m sorry if all I seem to do here is complain; I don’t really mean it to be like that, but I feel that maybe some of this stuff is relatable?) but by its very nature it crams my head full of information which my brain then has to sort through and file and process. Usually, for reasons best known to itself, it decides that the ideal time to do this is right when I’m trying to settle down for the night. Currently it is wading through a pile of architectural terms that I’m trying to learn for an exam. Flying buttresses, steeples, rotunda, basilica, pediment, tholos, pendentives, Doric, Ionic, Corinthian …

You see my problem. I should be asleep, but my brain has turned itself into a cataloguing machine. I suppose I’ll have to resort to the old favourite, counting steeples.

Er, wait. Sheep. Counting sheep.

That has never worked for me anyway.