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

Hello, friend! This post has been password protected for the following reason:

A long time ago someone I trusted played games with my fragile, developing mind. And now my mind is a worn, torn, scratched and dented game board where sometimes snakes turn into ladders and ladders turn into snakes and maybe the snake will eat you or maybe the snake will just whisper evil things into your brain.

I have strong feelings about this.

My favourite Danish words are for a dessert I don’t even like. And can’t pronounce.

Usually I will be happy to tell you the password if I have at least some inkling of who you are, or sometimes there are clues in the reason. If you have trouble, just ask.

Protected: 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


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.



what really, really challenges me and makes it hard for me to have hope is when i have to do things like explain to my children that sometimes it is the smarter choice to choose to concede on a dispute in order to protect yourself from more frustration and heartache. even when you believe that you are right. even when you make polite, eloquent and reasonable points regarding your position on the matter. why do i have to make my children understand that sometimes, it doesn’t matter how civil, how passionate or how persistent you are: sometimes, the entity with which you have a dispute will not even entertain the possibility of considering the validity of your arguments, because they have power over you and they are so sure that you can’t and don’t have the resources to take your case any higher than them that they don’t even need to pretend that they care.

how am i supposed to feel hope that one day i will not feel scared of the world so that i might fully participate in it, when it seems determined to demonstrate – over and over and over – on a personal, national and even global scale that it is fine with being arbitrarily unfair or injust?  when the people who are meant to work for us to improve people’s lives and world, are actually seeking to widen the spaces between us and magnify the differences so that diversity becomes adversity and is not a cause for celebration and learning but for fear and rejection.

how many times can you be knocked down before you can’t get up anymore?


two weeks

I know a lot of words but often I still feel like I do not have words that are adequate to express what is in my head and heart. I think in some way that is because feeling happens at a level of .. I don’t know, consciousness? Awareness? Existence? A level that is more primal than language. Language is something we have invented but feeling is something that we are.
The last while has been broken up into sections of two weeks. It’s two weeks since the notfuneral. That was two weeks since he died. That was two weeks since he went to the hospice. Saying it like that makes it seem like not a very long amount of time but it hasn’t felt like it. Is it really only 6 weeks since that disaster where everything got set back to zero? Six weeks that we spend waiting for the next set of appointments with the next person we have been sent to see, trying not to worry that they too will tell us that whatever is wrong with Stephanie is not their problem. And in the meantime having the not dying and then the dying and then all that stuff.
The not dying was worse than the dying, to be honest. Stephanie and I went to visit one day and it was pretty terrible. I mean, I thought he looked like shit at Nanna’s birthday. It was so much more when he was laying in a bed, literally skin sagging on bone, hands laying awkwardly because there was no muscle or energy left to put them where they usually go. Mouth open. Eyes neither open or closed. And it seemed like he had some sort of awareness of us but it was hard to tell for sure.
We make the choice to end the lives of other creatures that we believe are experiencing more pain than joy in life. We decide, they cannot tell us. They cannot tell us that they want it to stop. Making this choice for them is considered the correct and compassionate thing to do. Yet people who are capable of expressing that they want to do that are not allowed. Why has human life become so held on a pedestal that the thought of ending it – whether before it happens or at the end of its normal course – has become so taboo and so abhorrent? Sometimes it is the best and most appropriate treatment. It is considered a human right to be able to make our own health and medical decisions. So why is that right removed when it is needed most?
It is strange now that it is finally over. I don’t feel unbearably bereft or something that seems like it will never get better. I think in part this comes from having been expecting and preparing for it for so long. And in part because I don’t believe that this is the end of the adventure. I find myself thinking about numbers. He was a month short of being 87 years old. When he was born, in England, in 1929, the life expectancy for a male baby was about 55 and a half years. So when he was born, it was expected that anything he lived past early 1985 was a bonus. A thirty-one year bonus is pretty good, I think. When they watched the video my mum made Abigail commented that she didn’t know he was a twin. It made me wonder if his mum knew, before they were born. Obviously, no ultrasounds to tell you that, but on the other hand, the midwives were probably a lot more experienced at diagnosing position and number of babies by palpating. 
Another number: 80% of the people in our household have had a grandparent die this year. The 20% has one remaining living grandparent. (Luckily for her, I don’t think this statistic has great relevance to her likelihood of dying any time soon.) I am 35 years old and my first grandparent has died. For my children, that happened before they were even born. Daniel’s have been spread out.. I think one died before he was born, one when he was a kid, one a few years ago. I still have the most living grandparents in our house. 

two weeks