misconceptions

A little while ago a few different people shared a link to this article on Facebook. It is quite a long article and well worth reading, but to summarise – for her whole life, the author had been taught and conditioned to believe that every illness has a cause and people who live eating a balanced diet, getting enough exercise, avoiding drugs and alcohol and other toxins, who are in touch with their emotions and have no inner conflicts have no reason to ever fear becoming ill because it is only people who don’t bother to take all of the steps to give themselves the best chance at health who end up getting sick. When her daughter was born and was not the picture perfect “healthy newborn” that everyone desires, she was absolutely unprepared to deal with all of the emotions and thoughts that come with learning that your child has and will continue to have health challenges. She thought she’d done all the right things, so it never occurred to her that she could have a less than “super human” baby. When she did, everything she believed was turned upside down and it took a long time for her to work through all the doubt, questioning, and confusion that came with this new reality.

Here’s one of the best things she has to say:

If you buy into a false narrative that the body is controllable, that illness can always be prevented, then by proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person’s disability is their fault.

It’s so simple but so fucking profound. You can see evidence of this everywhere. How many depressed or anxious people have been told to “just snap out of it?” And because they are not following this advice, clearly they must want to be unwell, and if you’re choosing to live like that when it’s so simple to just snap out of it, you don’t deserve for healthy people to waste their energy on feeling compassion for you.

It’s not just mental illness, though. Diabetics – who have to be so careful about what they eat, who often struggle with weight despite their carefully planned meals and exercise, who can also be affected with side effects that affect their vision, nervous system, heart or kidneys. But there’s a persistent (incorrect) stereotype in society that people with diabetes have diabetes because they ate too much sugary food. (Example maths problem: John has 30 chocolate bars and eats 28. What does he have now? Sarcastic, uninformed answer: John has diabetes.) But because everyone knows it’s unhealthy to eat too much of certain types of food, it’s their own fault and they made their bed and now they need to lay in it and not expect everyone to feel sorry for them. [Edit: came across this very thing a day or two later.]

So reading that article really resonated with me. Because further to the idea that if you’re sick or disabled, it’s your fault – is the idea that if sickness, weakness, pain or disability is a permanent thing for you then you should have learned to “deal with it” and should not burden the rest of the world with your complaints. Sympathy or compassion for illness is a limited time offer. Expecting consideration from other people past your “compassion expiry date” means you are seeking attention, wanting special treatment, milking it for all it’s worth. Other kids at Stephanie’s school have said things like “I wish I didn’t have to do P.E.” I have heard people say to those that have a Disability Parking Permit, “Oh, it must be nice to get to park at the front all the time.” These small accommodations are held against you as advantages you get that other people don’t – with no consideration for what you have to deal with every day that has qualified you for the so-called “special treatment” in the first place. It is seemingly too much for people to stop and think – hey, yeah, it must be nice to have parking spots close by.. but I bet that if she could choose she’d take having to walk 100m further at the shops than being in pain all the time.

Also, having established that any illness or disability is the fault of the person dealing with it, and logically followed that through to conclude that they are undeserving of any compassion because of it, another conclusion that people seem to arrive at is that any unusual needs a person might have because of said illness or disability are unimportant – or at the very least, less important than the needs of people who are not afflicted. When I was in high school and had my brace, I found that in some of the classrooms at school it was extremely awkward and uncomfortable to sit in the chairs and work at the desks they were paired with. I solved this problem for myself by simply choosing to kneel on the floor instead, because it put me in a much better position to comfortably see both my work on my desk and what was going on at the front of the room. One teacher, though, would not have it. You’re meant to sit in a chair and that’s that. Explaining why I was on the floor had no effect. Pointing out that I was not causing any disruption to anyone else was not relevant. The chairs are there for you to sit it and you will sit in it. (Side note: I really wish I could go back and slap that bitch in the fucking face.) Stephanie was recently excluded from several classes where the students were given the opportunity to learn and be awarded a first aid (CPR) certificate because no one could be bothered to arrange to have the class moved to a room that she could access with her walker – despite her asking the teacher in advance because she’d been made aware of the issue by some of her friends who had already had that class. Look at the story of a girl who spent most of her high school years battling TWO different types of cancer. She hasn’t quite completed all of the necessary requirements because of the toll it takes both physically, mentally and the time needed for the treatments it takes to try to not die. It seems obvious that she’s been making extreme effort to keep up as best she can, even around all of the other stuff. There is clearly a plan in place for the outstanding work to be completed in a not-unreasonable time frame. But the school district refuses to let her participate in the graduation ceremony because making exceptions “diminishes the accomplishments of the graduates.” It might be called a graduation ceremony but it’s about more than just the actual graduating. It’s a rite of passage that marks the end of your standard schooling. And.. accomplishments of the graduates? Did any of them accomplish their schooling while TRYING NOT TO DIE? She is literally being punished for having an illness that prevented her from making school her only focus. Because as students we are told – if you do not knuckle down and have a singular, tunnel-vision like focus on your education, you will end up with no prospects and your existence will become a burden on society.

And society – or at least many of the politicians in charge – have decided that they have had enough. Why should healthy people have to support your selfish choices to be less than perfect? For they will never encounter an unexpected illness, they will never have an accident that leaves them paralysed, they will never be victim to circumstance that leaves their health, housing or education unstable or unassured. And if they did happen to have one of these unanticipated events occur, well, they were smart enough and motivated enough to be rich enough to handle it.

It’s not just your health (or lack thereof) that is your fault. I’ve come to realise by the comments that politicians, wealth privileged or health privileged make that any situation in your life where you are not “winning” is your fault and there is always a simple solution. Many, many Australians these days despair that they will never be able to afford to own their own home. There are lots of factors contributing to this situation but it seems the primary one is that costs for homes (and other things) have risen much more rapidly than incomes, and people simply can’t keep up. The thing that they are doing wrong, though, is that they are neglecting to get a “good job that pays good money.” Clearly, there are lots of these good positions languishing about, unfilled, because people are faffing about, stupidly working themselves to the bone in half-rate jobs that don’t pay the kind of money you need to buy a home. This statement is not just a one-off, though. Nearly two years later, a different minister is claiming the exact same thing: “[…] enabling young people to get highly paid jobs, which is the first step to buying a house.” The implication in all of these assertions is that if you can’t afford to buy a house, it’s because you’re choosing to not work in the big bucks, highly paid jobs. Of which there are obviously plenty.

It’s a worldwide issue. An American politician claimed this week that being poor is “a state of mind,” due to people having a “defeatist attitude.” I don’t think that having a defeatist attitude necessarily has to mean that you have given up and are not trying. People are having a defeatist attitude because they have been trying, working, striving, stretching for years, and watching others around them do the same and they are still failing to manage to achieve the goals that we are being told are easily attainable if you just work hard enough. If you just want it enough. But most of them are still trying, despite mounting evidence that it will never get them anywhere near where they want to be. At an event at the girl’s school this week, the principal was addressing the students and telling them that hard work was the key to making their goals and dreams a reality. That the most successful people are the ones that work the hardest. This is setting them up for disappointment. I’m not at all saying that hard work isn’t important, but there are myriad other circumstances and variables that factor into whether you will be successful – and most of them, you can’t control. This understanding has been around for ages. It’s not what you know but who you know. If you are not fortunate enough to be already present in social and business circles where you will be exposed to opportunities, sometimes it doesn’t matter how highly skilled or hard-working you are.

These linked topics underline part of what really scares me for the future. Stephanie’s, especially. As long as we remain unable to find an answer to what is causing her constant pain, we have to accept the premise that it is also unlikely to be possible to find an effective treatment. And that means that she will be facing all of this with a disadvantage due to the disability this condition confers upon her. While it may be law that it’s illegal to discriminate against people due to disability, I think most people would acknowledge that it still happens, probably due to the prevalence of the aforementioned perception that everything has a cause and a cure and if you’re not cured, it’s because you’re choosing not to be by not trying hard enough. Disability support in Australia is near impossible to access these days. One of the things you must do in order to qualify for a disability support pension is prove that your condition has no chance of improvement within the next two years, you have to show that you’ve received appropriate specialist care to stabilise you as best as possible. When your condition is undiagnosed because no one knows what’s causing it, it’s impossible to get the appropriate care and impossible to know if or when it might ever get any better or worse. So the mere fact of being a zebra basically means that you can’t qualify for help. The most frustrating thing is that Stephanie does not want to have a disability. She wants to go to university. She wants to not be in pain. She used to want to be a veterinarian, but I think now she is leaning more towards a human-focused health care role. As she is right now, she will struggle to just navigate around a university campus and find the endurance to attend all the classes and complete all the work. There’s practically no chance that she would be able to have a part time job to help support herself on top of that, which means she will be forced to remain reliant on us. And of course we’re never going to abandon her but that isn’t fair either. Gaining a measure of independence is an important rite of passage as one attains adulthood. I want desperately for her dreams to remain within her reach, but it’s hard to keep believing that they will when so many things are stacked against her. Not rich, not healthy, not male, not straight, red-haired. At least she’s white. Pasty white AF.

misconceptions

imagine

Imagine: you did something annoying, or forgetful. Not evil, not malicious.. just annoying.

You accidentally put the toilet paper on upside down.

A person notices that you did this. It makes them annoyed. They find you to ask you about it. “Why would you do that? You know I can’t stand for it to be that way.”

What you expect to happen:

You’re surprised. You hadn’t realised you’d done it wrongly. “Oh, sorry, I didn’t real-…”

“I can’t believe you would do that to me. It interferes with my whole toilet process. I just can’t go properly when it isn’t right. Do you think it’s funny to interfere with this basic simple function that people must do?”

“Um, no.. I didn’t..-“

“God! I just can’t understand why you are out to hurt me like this. You mess up my equilibrium when I’m peeing and then next thing I will probably end up with an infection. It is so incredibly messed up that you would try to do that to me.”

“… Uh…?” Is this even serious?

“You know people can get really serious, permanent complications from having a UTI. You can end up infertile. Never able to have children. Never able to leave your mark on the world by contributing to the human race. You want me to be infertile. I don’t understand how you can think so little of me that you would wish that upon me. The ability to create a family and raise children is an almost universal human desire and you don’t think I should be allowed to have that. What kind of person would want to take away another person’s humanity like that?”

“I don’t…-“

“AND sexual impotence. Not only do you want to take away my chance to have children, you want to take away my ability to enjoy an intimate physical relationship with someone else, because of the permanent damage I could end up with after the infection I will probably get from not being afforded the dignity to simply go to the toilet peacefully without your attempts at ruining my life. That is of course, if I don’t DIE. People can die from complications from a UTI, you know. You can get septic and have the infection in your blood and your whole system and you just die because of these new drug-resistant bacteria. There’s nothing that can be done to save you when you get sick like that. Nothing. Why would you want to do that to me? Why would you wish that on anyone? What kind of messed up person wants to do that to another person? Huh?”

You’re starting to become overwhelmed now. These allegations kind of sound ridiculous but the voice and tone of the person speaking them is anything but light. It is absolutely serious. You try to clarify, to point out that you don’t actually wish harm on anyone. “I didn’t .. I don’t want..-“

“What, so you are denying that you put the toilet paper on upside down?”

Good, a simple question, back to the beginning. You can point out that it was an honest mistake, and nothing was intended by it. “No, but it was just an..-“

“Exactly. You did it, knowing what the consequences could be. Knowing it could end up causing a severe impact on someone’s life. My life. Knowing that it could end up in me dying. And you are standing there and looking at me with nothing to say for yourself. Because you know there is nothing you can say. Normal people don’t try to ruin other people’s lives. Normal people don’t do things that could kill other people. What is wrong with you that you could be so cold and uncaring? Do you think other people behave this way? Because they don’t. And what do you think would happen to the people who care about me after I die? Would they be happy? Hmm?”

It’s kind of confusing, how fast this all progressed. How it went from you making a simple error that you didn’t even realise you were making into you being a person who has planned and committed this act with the express intent to seriously injure or even kill another person. It’s kind of unbelieveable. Like.. why would I..? But.. they are really angry, really offended and disgusted..

“Don’t you have any answer for that?”

“Um.. no.”

“No, what?”

“No, people wouldn’t be happy.” I don’t want to make people unhappy. But I did put the toilet paper on upside down. I think. I can’t really remember.

“Of course they wouldn’t. No one likes to have a family member die. Or a friend. But you’re so selfish that you intentionally do this knowing that it is going to hurt so many people. How do you live with yourself? How do you walk around interacting with people when you’re obviously really wishing such pain upon them?”

“But it was an accident. I didn’t put it upside down on purpose.” How can you not understand this? Or am I the one who is not understanding something..? This is confusing.

Sighing. A long silence.

“So what you are saying is that you just simply do not care enough to make sure to do things properly so that you don’t hurt people. I don’t know which is worse.” More defeated sighs. “Both options are just as bad as each other. Either way, you just don’t care about people. It doesn’t matter whether it’s just because you can’t be bothered to make an effort to do things properly or whether you actually wish harm on me and everyone who knows me. The end result is still the same. You disgust me. I can’t believe that I have to put up with this. With someone who is so far from a normal human being that they don’t care if I live or I die. What have I ever done to you to deserve this?”

By now, you’re just so, so confused, and you don’t know what to say. Part of you wants to believe that this isn’t real, but the rest of you knows that the anger and disgust in that voice and those eyes are 100% real. And so you have to wonder if maybe you are a bad person. And stupid. Because how could you not know that such a seemingly inconsequential action would potentially be so damaging to so many people? The idea that you could actually be responsible for someone’s death is almost too much to bear. You don’t want to be a murderer. But the evidence is there. You did a thing and you didn’t stop to think about how it would affect others.

“You don’t have anything to say for yourself, do you? Because you know there is nothing to say. It’s inexcusable. It’s not right, and it’s not normal. Just go. Just leave. I don’t want to see you standing there looking pathetic and sorry for yourself. What do you have to feel sorry for yourself over? It’s everyone else who will feel the consequences of what you did.”

Stunned, you start to turn, to leave, as you’ve been instructed. Maybe later, when things have calmed down a bit, you can try to ask Someone Else what they think. Try to figure out if you really are as horrible as it appears you are. ‘Cause surely you’re not, right? It was just one tiny thing. It didn’t really mean all that stuff..

“You’re just lucky it was me that noticed what you did, and not Someone Else. At least I’m the only one who has to know how really horrible and selfish you are. Someone Else doesn’t have to live with the knowledge that they have a person like you in their family. Imagine how much that would hurt them. How disgusted and disappointed they would be with you. At least they don’t have to deal with that. At least I can keep them from having to understand how really malicious and how completely inhuman you actually are.” Another heavy, laboured sigh, laced with the sound of finality.

You flee. Forget about trying to ask Someone Else. What if you tried to do that and they told you exactly the same thing? You’d know for sure how utterly fucking terrible you are. And disappointing them as well would be unbearable.

But.. I mean, it all seems so crazy. So exaggerated. Can me making a little mistake like that really tell people that I don’t care and that I would prefer to have them dead? I don’t want them to be dead. I don’t want them to think I’m a horrible person either. So maybe I should ask.

But what if they do tell me I’m horrible? No, I can’t ask.

Surely if I wasn’t so bad and selfish a person, I wouldn’t be worried about what they would say because I would know and be confident that they would tell me it was ok and it was just a misunderstanding. If it was just a misunderstanding, a miscommunication.. (First person) wouldn’t have gotten so thoroughly, completely, unmistakably incensed. If it was just a mistake, they wouldn’t be so absolutely infused with disappointment, sickened with disgust. If it upset them that much.. then I must really, truly be…

Sigh. “Oh.”

What actually happens:

You’re surprised. You hadn’t realised you’d done it wrongly. “Oh, sorry, I didn’t real-…”

They roll their eyes. “Sure, you didn’t realise.” They grin. “You know people have gone to jail for lesser crimes.” Then they laugh and wander away and have forgotten about it.

But you… immediately reacted expecting the first response. And even though it didn’t happen, your body and your mind are running wildly, your heart thumping not just in your chest but through your whole body and your eyes are filling with tears and your stomach is filling with guilt. And even though they weren’t actually angry, part of you has learned to doubt your own value so much that you can’t just take their silly joke at face value. Maybe they really are angry and disgusted with you, because it’s already been established that you’re a horrible human being. Maybe they are walking away because they don’t want to look at you and don’t want to hear your excuses. In fact, the absence of them specifically saying, “I am just joking and I am not angry at you,” probably means that they definitely are angry at you. God. Why do you have to be such a fuck-up? And this all happens in your head in the space of a single second.

Ten or fifteen minutes later, they wander back into your proximity. They look at you and notice that you’ve been upset. “What’s wrong?”

More tears spring to your eyes because now you know that even though you mostly managed to convince yourself that it was all ok, explaining to them that you were upset because you thought for a moment that they were angry at you is probably going to actually annoy them. “I thought you were angry at me.”

“What? When?”

“With the toilet paper..”

“What? Why would you think that? I didn’t.. I just made a joke about it?”

“I know…” But their confusion at your upset just makes you feel worse. Because they don’t deserve for you to react that way when they didn’t do anything to prompt it. “I just.. don’t like making you angry.”

“But you didn’t..” It’s almost like they’re talking to a very young child or an AI with limited capacity for understanding simple facts.

You nod. But your eyes are still brimming with tears that you are desperately trying to will away with the power of your mind.

A sigh. Such exasperation. You can tell they almost feel like they’ve been accused of doing something to hurt you when they haven’t, even though you did try to explain that you knew they weren’t angry.. you’re still fucking crying. It’s just so fucking weird and unexpected in their brain that they forget what they were coming for. “Ugh. Whatever.”

And now, you have succeeded in making them actually annoyed. Good job.

imagine

i don’t know how to sum this up in a few words.

fuck you

fuck you

fuck you a million times for what you have done to me

fuck you for what you still do to me, nearly 20 years after i even saw you last.

and for so long i didn’t really understand just how bad it actually was. just how deep the damage was. because it just became part of me. and i don’t even know anymore where things are just me and things are me because of how thoroughly you tried to destroy me.

there are aspects of it all that i have only recently started to understand. probably because for a long time i just did my best not to think about you and the way you made me feel. tried not to think about being a teenager. when you made me hate myself. tried not to think about being a child. because you are there. i can’t even just share a simple anecdote about my own childhood with my children because i don’t want to have to talk about you.

i wonder most: why?

it wasn’t always like that. when i was young you were happy to spend time with me. when i reflect though i recognise that you never really saw yourself as being a parent. you interacted with me, played with me, had fun with me but you did not ever establish yourself as an authority figure that was equal yet separate to my mother, capable of acting independently as well as concurrently. in some way, you always deferred to her.

one time, when i was a teenager, you took from my bedroom a diary that i had been given as a present from one of my friends. there was not much in it, as i already had another one. but you took it, and then in one of your “sessions,” you accused me of having filled it full of pages about how much i hated you. i hadn’t. and i didn’t, not then at least. but i was unable to defend myself because you had taken the item that could prove that i hadn’t done as you were accusing me. i don’t know why you accused me of feeling that way towards you – i suppose it is possible that you actually believed that – or why you felt the need to flat out make things up to be angry about. i have kind of come to the conclusion, over the years, that you must be incredibly messed up in your own way. and maybe that was why you had to sabotage whatever relationship we might have had.

i didn’t hate you. i loved you. i didn’t keep you separate, you kept yourself separate. i have a vague memory of one of the few times that mum actually went to the parent-teacher interviews at school, and enquiring if you were going to go too. you weren’t. you were not my parent. or maybe – i was not your child. because i was happy for you to be my parent. i – the sensitive child – argued with other children when they told me that the two of you weren’t really married. i defended you at the cost of my own tears and hurt heart and loneliness. i continued, despite my past experiences, to tell people the truth. you were not a roommate or a friend or a random off the street, you were part of my family. and i knew that it was a risk each time i told people the truth but i did it anyway.

if you were separate and not the same as my mother, it was because you wanted it to be that way. not because i did.

but not accepting the role of parent is still worlds away from the role you eventually did give yourself. of torturer, brainwasher, spirit-crusher. abuser. i didn’t understand back then that what you were doing was abuse. i thought that abuse was when your parents (or the adults who had responsibility for you) hit you, kicked you, whipped you, beat you. broke your body. even as i felt my heart and my spirit breaking i did not truly understand that i didn’t have to endure it, that i shouldn’t have to endure it. and so i couldn’t really tell anybody and ask for protection, because i didn’t understand that i needed it.

the internet is a crazy, huge, strange, information filled place. and because of things i have learned from the internet, i have started to understand how much what you did to me really was abuse. not just “being angry” or “being mean.”

when people get angry at you, you can recover from it. time allows you to cool off and handle things more constructively. when people abuse you, time doesn’t reset things back to normal. you never stop fearing the next attack, the next explosion, the next time you’ll be reminded that you are a poor example of a human being, that all of the things that make you you are wrong, inadequate, inferior and disappointing. so absolutely disappointing.

one of the things i have learned is how much better children’s brains are at learning things than adult’s brains. in fact as your young brain learns, it actually grows and shapes itself to suit the type of input it receives. learning new languages, with different sounds and word shapes and vocal combinations takes that much more effort for adults because not having been exposed to those sounds as young children means that our brains have not customised themselves to use that information. we still can, but like using a fork for soup, it takes longer and you spill a lot. so: what happens when one of the languages you learned was how to hate yourself and how to feel like everything you did and thought was letting down those around you? is my brain literally designed, by you, to constantly be expecting to anger and disappoint people, to feel the need to apologise and shrink away in shame at even the slightest of friction?

yes, i think it is.

and that is a problem, because when i react in a disproportionately ‘kicked puppy’ way, that in turn frustrates and offends the people around me. well, mostly daniel. i get it, from his point of view: why should i react that way to something he expressed in mild annoyance? what has he ever done to give me reason to react that way? he hasn’t, and yet here i am, choking back tears and struggling to find my voice, behaving as if he has spent the last hour and 19 years yelling at me. he doesn’t understand why i react that way, because he has never treated me that way. and despite me trying to explain that it’s me, not him, i am sure he wonders why, after all this time, i have not learned to trust that he is not going to hurt me.

why? because that is how my brain is wired to work. because you didn’t abuse me from the beginning. you were normal and kind and fun and indulgent at first. but one day, without me knowing, something changed and i became a burdensome disappointment. how can i know that one day that won’t happen with him, too? 

another thing i have learned is that people who abuse find ways to make their victims feel like it is their fault and that seeking help from someone else would be a worse thing than suffering alone.

you told me: i was a disappointment because i was not an extrovert, always socialising, getting in trouble for coming home late. because i was not playing sports and in teams and clubs and groups. because i did not have to be nagged and encouraged and threatened to achieve at school.  because i was a child, a human being, with flaws and fallibilities and fragility and i made mistakes. and every mistake i made was a constant reminder to you of what a terrible excuse for a person that you were stuck having to live with.

at one stage, it was one of my chores to give jeffrey a heart worm tablet each day. i did my best. i understood that it helped him to stay healthy. i loved him. he was always happy to see me in the way that only a dog can be. but i forgot occasionally. on one of those occasions, this was the point that you decided to fixate on. why, you asked me, did i not care about his health? of course i protested that i did. but if i did, you said, i would not forget to give him this pill that protected him from heartworm. so it was obvious that i was lying.

“how do you think your mother would feel,” you asked me, “if she knew that you don’t care about her dog and by not bothering to give him his tablet, you’re as good as trying to kill him? do you think that would make her happy?”

of course not. nobody would want to know that their child was a murderer. or attempted murderer.

and because it would upset her so much, that is why you were kind enough not to tell her. and i was lucky, because not telling her about that and about all of the other ways that i was a disappointment allowed her to keep believing that she actually had an ok child. and that is how you protected yourself for ever having to answer for how you treated me. by exploiting the simple truth that no child wants to disappoint their parent. by making me feel grateful that it was only you who truly saw how terrible i was you ensured that i would never really, properly tell her just how small and worthless you made me feel. by making be believe so thoroughly that the problems were not in your expectations of me but actually me: everything i thought and felt and did. by reminding me how much of a miracle it was that somehow my mother was unaware of the extent of my failings you made me struggle to just keep acting ‘normal’ so that she would not ever have to learn just how cruel you were being.

still, now after this long, i have never really talked about the extent of what you did. she knows it happened, of course. and probably that there are huge scars on my soul because of it. but apart from protecting myself by not often bringing it all to the surface, part of me also wants to protect her. i know how it is inevitable that she will feel guilty for not having known and not having done something, despite the fact that i can see, clearly, how you ensured that i would not allow her to be aware. but because i have my own children and because i have the parenting instincts that you apparently did not, i know that it won’t matter – because real parents hold themselves to unattainable standards when it comes to what they can or could have done to give their children the best possible environment to grow up in. and because i am so similar to her, and i know that even when the logical, rational part of me assures me that i have done the best i possibly could in any given situation.. the emotional, nurturing, mother bear part of me keeps ruminating and analysing and trying to figure out what i could have done differently to make things better for my children. and i don’t want her to feel like that.

every day, i have to forcefully remind myself that i am not a disappointment. that i am enough, exactly how i am. that it is ok to not like loud music or big parties or staying out late, that it is normal to be happy to learn and read and to love and accept people for who they are. that mistakes as a wife or daughter or parent don’t mean that i am evil and trying to hurt the people around me. that they don’t blame me for them, even when the inner voice you gave me tells me that they do and makes me terrified that that moment is about to happen, the one where they suddenly see through all that i try to do and be and realise that underneath i am a useless, ineffective, stupid waste of a person.

every day i tell myself these things and every day i need to be reminded again because i still have not been able to teach my brain to believe it.

so, fuck you. fuck you for whatever made you want to hurt me like that and fuck you for not choosing to fight it in order to protect a child that trusted you. fuck you for being selfish and signing up for a package deal when you obviously weren’t prepared to accept the whole package.

— 

i… don’t want to hurt you. on the surface, yes, it would be easy to say that i wish i could make you feel the depth of what you made me feel. but when i actually think about inflicting that upon another human being, i can’t hold to that wish. i don’t want to cause any person to feel that, not even the one who has wronged me most.

my beautiful husband, though. he hates you for every tear he’s ever watched fall from my eyes, and every tear that he was not there for. he has no problem assuring me that were he ever to encounter you, he’d have absolutely no problem with embedding his fist in your face. multiple times. and despite my general preference for non-violence, i have to admit that part of me is pleasesd that he would fight for me. i don’t think that he has ever really punched another person before (except his sister, and i’m assured that is normal and was a mutual conflict) but he would, in order to try to balance the scales of pain, for me. for me. because that is what you do when you love people.. anything, even things that are ultimately futile. anything to show that you care, because doing nothing would be unbearable.

i think that this is what makes me most sad. that you had people who were ready and willing to love you like that, and that was still not enough. if that was not enough then there was not anything i could have done or been differently that would have changed things. so while it is a relief to know that the underlying problem was not me, it was you.. it is immensely saddening to know that you would have hurt me anyway because hurting me did not cause you the pain that good people feel when they know they’ve wronged another.

i don’t know how to sum this up in a few words.

sticks and stones

The way that a lot of topics are talked about has changed dramatically since I was a child. Children are warned about the same potential threats but what constitutes a threat is not necessarily the same. Don’t talk to strangers and definitely don’t get in their cars is a pretty standard one. If you were aware of people breaking the law, you should report it to the police or a responsible, trustworthy adult. If you knew that someone was being bullied or was a bully, you should tell a teacher. If someone was being abused at home, you should talk to a teacher who could help to get the situation changed.

What’s bullying? What’s abuse? A bully is someone who is constantly hurting another person (hitting, kicking, biting, etc) for no good reason, they explained to us. What is abuse? It is when a parent or other relative is repetitively violent with a child, who has done nothing to deserve it. Or it could be sexual abuse, when an adult is inappropriately sexual with a child. Basically, bullying and abuse were the same thing, just from different people. Bullying is violence from your peers, abuse is violence from adults or other care-givers.

That’s what I understood when I was a child, anyway.

That people could do just as much damage to you with words alone was not something I was warned about the way I was warned about other dangers to my wellbeing. If you did happen to complain that other kids repeatedly teased you, or were mean to you.. they got told not to do it and you got taught a mantra: sticks and stones may break my bones, but names will never hurt me.

Or: don’t be so sensitive. Just be glad that they aren’t beating you up. This is what people do. This is what kids do. You need to not take it so personally. They only do it because they can see that it upsets you. 

It’s confusing to be told that. Someone you have approached for help is confirming what you know – that the person crafting words designed to make your heart feel tight and your throat and eyes to prickleburn with tears is doing it precisely because they know it upsets you – but you are the one that needs to harden up. Not them that needs to learn some compassion. All they’re doing is attacking everything vulnerable about your sense of self, your sense of you.. but it could be worse. They could be giving you black eyes.

Sometimes I wished for black eyes. Because I knew that physical wounds healed. There was medicine that could take away pains in your body. Yet nobody ever acknowledged the pain in my soul as being anything more than a minor inconvenience. It’s difficult to understand how you can feel so bad inside, so worthless, so filled with dread about your next encounter with the people who make you feel that way – who have been acknowledged as specifically targeting you because you get upset… and yet have adults tell you that this is the normal way that kids behave. You’re the one who is unbalancing the status quo by not just letting it slide over you like water off a duck’s back. So, to summarise: it is normal for other kids to be mean and it is abnormal for you to get upset about it. 

Victim-blaming, A+++.

Most of my experience with what I now understand to be bullies happened in primary school. I do remember sometimes telling my mum about it, but I don’t think I ever really shared enough for her to understand how bad it was. I think that one of the prime reasons for this was because it started after I innocently shared with someone that in my family, it was me and my mum and my mum’s wife. At 7 or 8 years of age, I had not yet encountered and did not really understand homophobia and I certainly didn’t understand that Queensland in the late 80s and early 90s was not always the most welcoming place for an LGBT family. Obviously, it is unlikely that other kids were aware of the political difficulties of the time, but I think it likely that it was an  unusual enough thing to have another child claiming that a family could have two adults of the same sex that at least some of them shared this with their parents, who in turn shared their homophobic values with their children. And once they had that to criticise me about, and discovered that I was an emotionally sensitive child who was prime fodder for bullying.. well, they let their imaginations loose.

One girl came up with a little jingle. Jade, the alien from outer space. It had a tune that the kids would sing-song it in. This one was particularly confusing to me. It was clear by the way it was said/sung that it was to be understood that being an alien was not a good thing. But having been exposed to such fictional universes like the one depicted in Star Trek, I definitely did not view aliens and outer space as bad things. I was also pretty fucking bad at sport, which made me a target for ridicule and derision too. To the point where many times, my genuine best effort at team sports still resulted in the people who were unlucky enough to be stuck with me on their team angrily accused me of intentionally sabotaging our chances at winning. 

Now, of course, I understand that not all kids were fortunate enough to be raised to appreciate diversity – whether it was in the from of aliens or gay people. And I also understand that it doesn’t even matter if what the bullies say to you is true. It didn’t matter that I clearly was not an alien and that the vague, terrible “gay menace” was not actually me either. What mattered was that they knew they would hurt me by picking on any of these topics. And they did it anyway. Then, because I got upset and cried, I was also a big sooky baby. And that just gave them something else to add to the list of things that would push my sensitive buttons.

I think that schools and stuff now are much better about teaching kids about the different forms that bullying can take. It’s no longer just about physical violence. I am not convinced that their better understanding of the presentation of bullying has carried over into better ways to prevent it from happening and handling it when it does. It seems like a lot of kids still feel like they are powerless and not a lot is done to punish the ones doing the bullying. I hear stuff sometimes about how bullies need to receive care themselves, that it’s because if a lack of something they need that they behave like this. I don’t really believe that. It might be true occasionally, but by and large there is no way that you can tell me that kids do not understand that what they do is hurtful. And when they are doing it and they know that, then they should be punished. Turning them into victims that need help means that their victims are being neglected and made to feel guilty for the lack of compassion they have for the very people that are making them miserable. 

sticks and stones

angry

i have been feeling a bit angry at the world lately. angry at people and circumstances and things that mean that things are a certain way. usually a difficult way. i’m finding it more difficult to remain polite and civil about some things.

like, i know that it’s not stephanie’s teacher’s fault that she has to ask for proof that stephanie was at a doctor’s appointment last week, which meant that stephanie missed a lesson that was part of a planning thing for an exam. so stephanie asked if she might be able to get an extension since they were supposed to specifically use these few classes to pre-write their essays, and then squish enough keyword notes into 100 words that they are allowed to take into the exam to allow them to rewrite it during the actual exam. (yeah, it sounds pretty convoluted to me, too. but whatevs.) i did not know that we would have to prove that we were at a legitimate appointment so i didn’t think to ask the guy for a medical certificate. as it happens, i did take some photos of the pathology request forms because there was a big list of tests and i wanted to look up exactly what they all are. so i said that was really the only proof i could offer, and they said, yes, send that. so i did. but why do i have to? why are they treating stephanie (and by extension, me, as (one of) the adult responsible for her) like she has done something wrong, has skipped out on school for kicks, and placing the onus on us to prove that we were not doing the wrong thing, rather than accepting our word that we were not? that’s not how “innocent until proven guilty” works. and if it’s good enough for courts of law, then why is it not good enough for schools? so, yes. i am angry. because my daughter has worked hard her entire time at that school and had consistently good results, which continued even through the last year or so despite the fact that she’s got this mystery chronic pain causing illness, and that is apparently not enough to demonstrate our trustworthiness. i am angry because it is fucking hard enough trying to get people to help and figure out what is causing this and if anything can be done to improve it without being treated like a freaking criminal for doing so.

and actually there is a list of other reasons why i am angry at school. many of them are related to what i believe to be sexist and outdated policies which place different requirements on students depending on their gender. which, you know, most people realise that in this day and age is not acceptable. but apparently if it has been like that way for a long time and the p&c have approved it then little things like gender equality and discrimination don’t matter. but most of all i am angry about how unaccommodating they have been in regards to stephanie’s needs. last year, after her doctor at the cymhs called the school and explained to them that she really did want to go to school but she needs some adjustments made, and they finally made some effort to make changes to enable her to be going, one of the things we asked them was if she could have her uniform modified somewhat. because extreme fucking pain in her legs that hurts whenever they are touched. that hurts when she has to put socks and shoes on. no, they said. not possible. the uniform is an immutable law, it cannot be changed or circumvented in any way. it’s as unavoidable as gravity. no exceptions can be made. not even for things like CHRONIC FUCKING PAIN

TURNS OUT, the education department of queensland instructs principals and schools to “develop a process for managing special circumstances of particular students” and to “consider students with physical impairments requiring greater flexibility in interpretation of dress codes.” now, it could just be me, but somehow i don’t think that when they say about “developing a process” they mean that they process should be flat out saying NO to everything you ask. so, angry? yes. because i am the one that bears the brunt of most of stephanie’s moods when she is tired and hurting after a day at school. i am the one that has to watch her sob and scream and fade as this goes on and on and we still have no answers. and they are so hung up about their fucking “reputation” that they think it is fine to make a 15 year old girl experience more pain just so she can go to school.

i am angry at myself. always angry. disappointed. the thing is that i work so hard, to do what i do manage to do. to take care of my children and my husband. but it isn’t ever enough and i don’t know how i can possibly ever be enough. i don’t want to be a burden. i don’t want to be the reason that we might never be able to have our own home because we only have a single income. i don’t want to be the reason that my children resent us because they don’t have their own bedrooms or their own computers. (those things, i know they don’t need. but it would be nice to have the ability to give it to them.) i don’t like saying no all the time when they ask for something. (and yes, i get that sometimes kids ask for shit and you have to say no. but when it feels like you are constantly saying no, it gets hard.) this guy, several years ago, when i applied for the disability pension, listened to me lay myself bare and explain all the problems in my head and in my body and he still said to me, no. sure, you have problems but you can get some counselling and be better. but i have already spent pretty much my whole adult life striving to be better than the voice in my head, the pounding in my heart, the sweat on my skin, the cloud over my head. i AM better. not better looks like me trying to curl into a tiny ball under my desk or my bed, too afraid of the world to look at it. my better is me still having to sometimes tell my children that i can’t take them to the park because it is too hard. my better is me starting from morning on thursday, working all day up to having the ability to drag our bins from where they go to put them out onto the street for collecting on friday morning, because people will see me. my better is not being able to hang washing onto the clothes line because people outside can see me and because it hurts my back to repeatedly lift my arms up to peg things up. my better is getting a sharp pain in the lower part of my back while i am washing dishes, and having to slowly back away from the bench while holding onto it, gradually bending until the pain eases, then go and do something else for 5 or 10 minutes until i can do some more. my better is seeing the grass get longer and longer and knowing that trying to mow it will mean not only working myself up to the exposure that being outside brings but resigning myself to feeling especially creaky and decrepit for several days afterwards. my better is being bothered by a hundred things that should only be a minor inconvenience, but in reality cause a rising panic that everything is spiralling out of control and i can’t reach to grasp onto anything solid. so when that guy essentially implied that i wasn’t better because i hadn’t tried enough, it was a hard blow. it took a long time to get to the point of understanding that this is who i am and what i am like and that there might not be any better better than what i already have. and having that realisation made me feel alright about asking for help. turns out, the voice in my head that always tells me i am not good enough, that i am doing it wrong… is right. i am even not good enough at being anxious and depressed and deformed and in pain. and that is why i am angry at myself.

i am angry at the person who put that voice there. who found it so impossible to believe that accepting her could truly be as simple as knowing that someone i loved loved her. who pushed and picked at every insecurity a child had and then added more, just to make sure that she was doing a thorough job trying to alienate me so much that it would prove that i didn’t mean what i said and that i had hated her all along after all. the words of someone i trusted that told me so often that i was not normal and not like other people and selfish and strange and disappointing. and when it is someone you trust, you believe them. and then your own voice learns to tell you all those things. and i don’t know if it can ever learn not to, and that makes me angry.

i am angry at a society that forces me to opt-in to allowing my husband to do things on my behalf. i should not have to authorise him to make an enquiry for me. i have already authorised him with my heart, every time i tell him that i love him. i have authorised him with my soul when we stood together and exchanged vows and rings. i have authorised him with my body, every time that i use it to share in pleasure with him. the default setting should not be one that assumes that people’s spouses cannot be trusted with information. how about, if you don’t trust your spouse to ring up a company or government department on your behalf, then they maybe should not be your fucking spouse. i am angry at the backwards asshole parts of this world that will not grant equality to same-sex couples because it would destroy the “sanctity of marriage”. news fucking flash: they have already destroyed the sanctity of it, themselves, by refusing to accept my husband as my voice, my proxy, my advocate unless i explicitly request so. that is what it means for him to be my husband. it is supposed to set him above all others in all matters pertaining to me.

and that all leads back to more being angry at myself. because things wouldn’t be a problem if i was a normal person. a not anxious, not depressed, not introverted, not me person.

angry