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.


under pressure

A while back I watched a movie. I think my mum downloaded it and gave it to me but it might have been me that downloaded it. It is called It’s Kind of a Funny Story. IMDb’s tiny description says “A clinically depressed teenager gets a new start after he checks himself into an adult psychiatric ward”.

It may come as a complete shock to anyone reading this, but.. I really related to the movie. Like the kid in the movie there’s nothing especially wrong with me or my life.. it’s just not right. I think that is sometimes part of the problem in trying to express yourself and help other people to understand you – you can’t tell them what is wrong because there’s no specific thing you can say that explains why you feel the way you do. And in the absence of being able to name specific reasons why you might be depressed or anxious or paranoid, anyone who hasn’t experienced it themselves or maybe with someone very close to them just can’t make the connections to understand how it really works. Maybe it’s vaguely comparable to the loss of a sense: colours and lights and sounds are still always there, in the world, but a blind or deaf person’s ability to interpret and respond to those stimuli is different than fully sighted or hearing people. Everything in my world is essentially the same as in anyone else’s world, but my ability to process and have the right reactions to things is impaired. And just like blind or deaf people have adaptations in their personal environment or habits that enable them to operate in the world even though it’s not designed to be easy for them, so do I do certain things differently to try to make it as easy and painless as possible for myself to continue to live a fairly normal existence. But no matter how good your guide dog is or what kind of changes you make, it still doesn’t change the basic problem that you can’t see. No matter how good your drugs are or your shrink or counsellor.. it doesn’t change the fact that underneath all of that, your brain does not always have the ‘right’ responses to various events.

So I think part of what I liked about the movie was that it showed other people struggling with things like I do. Not all necessarily with the same problems as me but people who had problems that are not easily explained like ‘I fell out of a tree and now I can’t walk’ or ‘I am blind’ where even if people don’t necessarily know how it feels to live with that, they do at least have some understanding as to how it affects you and how they can adjust their own interactions with you to make it easier. Someone might hold the door to assist when they see a person in a wheelchair coming, because it’s obviously awkward to try to open the door and operate the wheelchair at the same time. But when the problem is in the way you think and feel, it’s not as simple to say When you talk to me, it makes me feel hot and I get sweaty and there’s a pain near my heart and I feel like the inside of me is vibrating like a seismograph needle during a magnitude 8 earthquake, yeah, really, even though looking at the outside of me I appear perfectly still which is so strange when the rest is shaking and rattling that much, and all of those things make it hard for me to have clear and focused thoughts about the interaction you have initiated and what I am trying to do right now, and that makes me wonder if my mumbled or short or stilted answers make you think that I’m drunk or drugged or crazy or unfriendly or stupid or snobbish or maybe something else entirely and then that makes me feel bad because I am not trying to be rude or standoffish, and sad because I’m not unfriendly or impaired by alcohol or pharmaceuticals, and annoyed because it’s not fair of you to think that I am drunk/drugged/crazy/unfriendly/stupid/snobbish/other when it was your fault in the first place that I started feeling … this. And then so very sad again because I realise that it’s not really your fault, because talking to people is what (most) people do and you don’t realise that it makes me feel like that.. because the problem is my reactions, not your stimulus.

When I have a string of bad days where that feeling is there more than it’s not, it becomes harder and harder to stay hopeful and cognisant that it will pass and I will feel better. It’s a type of exponential slope, and the further I slide down, the steeper the ground I have to climb to get back to the top. Or near the top, because I don’t ever really get to the top. Occasionally, I leap high and fly for a few minutes, gliding far above the ground hand in hand with my love and from up there everything looks so small and it becomes hard to understand and remember how I am always pushing, pushing in an uphill direction when I am on the ground – partly because from that far up you can barely even tell that the ground is inclined.

Having flown, I gain more energy to climb further, I get closer to the magical top of the mountain. For a while, it is easier to keep hold of the terribly steep ground that it is so easy to slip downwards on. I remember that I can get past bad days and I can be hopeful and I feel that maybe I am not actually a terrible mother and wife and daughter and person. Being hopeful and believing that I can keep going through to something better is one of the most important things I need to have. It’s quite cruel that the miswired parts in my mind that make me feel the bad things also rob me of the ability to maintain that hopeful belief. When I have a cold I know that I’ll be better in a few days or a week. When I have a Bad Head Day I feel like I will never ever have a Good Head Day again and the Bad Head Days are so black and gloomy and terrible that I might as well not even bother having them either.

The people in the psych ward in the movie all know that each of them is there because for some reason they can’t quite deal with the outside the way people are supposed to be able to. And because they know that other people are climbing the same mountain, fighting the same battles, they’re able to be empathetic without being pitying, supportive without having to understand. The mere knowledge that other people struggle and other people try gives them more hope and more energy to push off their fears and doubts that are holding them back.

This scene, where they are having some kind of group therapy which involves music, is so representative of that thought to me. They can’t really play instruments, they can’t really sing like Freddie Mercury and David Bowie, but knowing that everyone has doubts and fears equalises them and lets them just do it. It lets them dream that they are the best, most confident, talented, unafraid, outgoing versions of themselves. And the song that they’re singing has some very thoughtful lyrics. I have always liked Queen, but after I watched this movie, Under Pressure has become one of my favourite of their songs because it reminds me of this scene and this HOPE and that I’m not the only one who must climb uphill all the time.

Pressure pushing down on me
Pressing down on you no man ask for

It may push down on me but it’s not only me. And no one wants to feel this way, but generally, people do keep fighting.

It’s the terror of knowing
What the world is about

Sometimes one of the worst things is knowing that I’m not supposed to feel how I do. Knowing that so many seemingly simple tasks really are simple for lots of people and don’t cause them to feel scared, worried, panicked, unworthy, inadequate. So then: why me?

Chippin’ around – kick my brains around the floor
These are the days it never rains but it pours

Bad Head Days are like rain. Lots of Bad Head Days in a row are like .. summer in Queensland where it pours, continuously. And there’s no break and the water threatens to flood and there’s a serious risk of drowning.

Pray tomorrow – gets me higher high high
Remember that hope. Remember that tomorrow I will be higher up the mountain and the flood waters will be receding.

Insanity laughs under pressure we’re cracking
It never really makes sense. Why do I have to keep climbing and falling, climbing and falling, the same struggles over and over again. Can’t I just climb up and stay up? If I’m just going to fall down again, why bother climbing up?

Can’t we give ourselves one more chance
Why can’t we give love that one more chance

And loves dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves

You bother because.. maybe this time I will stay up without falling back down. Because I’ll never get the chance for that if I don’t try. Because there are people who care about me who have invested time and effort and love in helping me to get up and stay up and I don’t want to be undeserving of that. Because I’ve had glimpses of what it might be like to live at the top all the time and not reaching out for that would be much worse than getting there for a bit and then slipping down again. Because time is not infinite and as long as I keep trying I will keep having Good Head Days that make it worthwhile. Because this is the only life I get, and that’s such an amazing gift that I am obligated to myself to try to live it as happily as I can.

under pressure