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


Man, I really don’t want to do this morning. Feels like there is so much to do and so many possibilities and so much chance of more frustration, disappointment and grief. I was kind of just managing with what I already had on my plate but yesterday my phone decided to shit itself and the screen does not respond to any touch input at all. I know that it is just a phone, a thing, and not important in the “grand scheme,” but it’s what it does that is the source of my frustration. It lets me play games and distract myself, it lets me take pictures and escape into looking at other people’s pictures, it lets me find out information right now that I would otherwise worry about until I get home and can use the computer.

It’s also the third time in less than a year since I got it that I have had to return it for fixing, and that is just fricking annoying. When I got it there were dead pixels in the camera, and that got fixed; then a few months later it had the same problem as I have now. We (well, Daniel, coz I made him ring up, since their stupid website 500ed in the last step of the ticket process) told them that enough is enough and they need to replace it rather than just keep giving the same, obviously faulty one back. Someone has to “assess” whether it is worth doing that and I have to take it to a place in Carindale. Coz I just love going to Carindale by myself.

By myself, because mum is not here. She is at the Sunshine Coast again, though probably for the last time for a while. She left straight from the hospital after last Wednesday’s disaster. Coz Grandad went into the hospice on Tuesday afternoon. I couldn’t remember what it was called when I was trying to tell Daniel, and I told him that he was going to the “dying house place.” Hospice is another one of those words, the ones that try to delicately skirt around topics that some people find hard. And it sounds like hospital and sort of gives the illusion of possible recovery. I think so, anyway. But we know that is not going to happen. The cancer in his stomach has taken over so much that there is barely any room for it it digest and absorb, and it is plainly obvious to look at him that his reduced appetite has resulted in his body burning away all possible reserves of fat and energy it had, just to keep going. But he did, and he made it to their anniversary, which he said he was going to do even when we all thought he would be gone last school holidays, before Abigail’s birthday. I think that he doesn’t want to go to the next great adventure without his sidekick (though actually I think maybe he’s the sidekick and she’s the ‘headline’ superhero.)  I get that. Of all the things I the world, I relate to that most of all. So I think that his determination has kept him going for this long and that is kind of amazing in itself, but I don’t think that the spirit can power the body indefinitely, a body is a finite resource. And as the saying goes, he is running on fumes. 

So one day very soon even those will be exhausted and that will be the end. This waiting for someone to die is very much like waiting for someone to be born, nature and the universe have a timetable that we are not privy to. But when you are waiting for a birth it is anticipation of joy, and when you are waiting for death it is.. not. We had this, to some degree, with Lisa, but we were removed physically and didn’t have that edge of a cliff, dread of imminent change that we have been expecting for, like.. months,  now. She was sick but not “die any day sick” until much closer to the end. Doctors have told us he would be gone a year ago, or two, even. Part of me wants to be mad at them. How can you make mistakes like that and make people live with this dread for so long? Yet I know the answer is that for all they know, the body is still in some regards, very much still a mystery. Especially where the power of one’s will comes into play.

But this also relates back to my other main problem right now. If doctors will tell you that when someone is dying and they underestimate or overestimate the time that is left because the body is not a well oiled machine that follows an instruction manual, then how can this man from last week look at us and so firmly and dispassionately tell us that he is absolutely right and we just need to deal? It can’t be both ways. How are we mere lay people meant to navigate and make sense of it all when even doctors can’t explain everything?



Feeling rather flat and deflated today. We had so much hope and expectation that yesterday we were finally going to be talking to the people who would help and have real and practical solutions to help Stephanie be better. And we got up at the crack of dawn and we drove through the morning traffic to get to the hospital for 8am, and we had all these back-to-back intense consultations with a variety of different types of people. In the three hours between 8 and 11, we talked to a physiotherapist, an occupational therapist, a music therapist, a social worker, a pain specialist doctor (and the nurse practitioner who accompanied him and appeared to be his scribe), a psychologist and a psychiatrist. For some of them Stephanie talked to them separately to me and my Mum.

Then we had to amuse ourselves for two hours while they were meant to be putting together the best plan of action for Stephanie to be recovering, and we came back after that expecting to hear suggestions for treatments and adjustments and whatever..

Instead the doctor guy sat us down and said, “Actually, nah, she doesn’t have CRPS. So we can’t help you.” No, actually, what he did was waffle around before actually getting to saying that and then tried to tell us that it was actually a good thing because now we have a clear diagnosis that it’s not that – at which point I interjected to say “So what IS it then?” and he twiddlefarted around a bit more and said that it wasn’t really any specific thing but what he thinks is that she’s “somatizing” and that’s why she has pain. So I said, “So if it’s not a specific thing and you can’t give it a name then it’s not really a clear diagnosis, is it?” And he kind of shrugged and told us that while he supposed you could look at it that way, it really was good because he felt very certain that it wasn’t CRPS and that meant he could pass the problem off to someone else to deal with and feel very pleased with himself that he’d done something meaningful and useful for people who are clearly desperate for help.

(That last part may have just been my interpretation based on his manner and body language.)

So we asked him to explain why he feels so certain that it’s NOT CRPS when both our GP and the previous pain doctor we saw at the hospital felt quite convinced that it is. On the matter of the GP, he essentially said that GPs are Jon Snow and it’s beyond their paltry understanding. With the other doctor, he said he had better information and asked better questions than her and did better examinations than she did.

So what is it about his examination that makes him so sure it’s not CRPS? Well, Stephanie was walking, for one thing. People who really have CRPS won’t do that because it hurts too much. I pointed out that EVERY SINGLE FUCKING PERSON we have seen trying to get help has told us that UNDER NO CIRCUMSTANCES should we let her not move about JUST BECAUSE IT HURTS, because that would make it WORSE, so WE ABSOLUTELY MUST FORCE HER TO DO STUFF EVEN KNOWING THAT IT WILL CAUSE HER PAIN. And since we HAVE FUCKING DONE THAT and made her miserable and made ourselves miserable and guilty and tried to console ourselves that we are doing it for her ultimate well-being… he is deciding that she can’t really be bad enough for it to really be this.

And something about the spinal cord being involved in the sensitisation of the skin and stuff and since she’s wearing clothes it must not be the spinal cord, it’s just something else. Despite the fact that he stroked her skin and bent her limbs and poked her with a fucking paper clip and watched her grit her teeth and close her eyes and do her best to tolerate it BECAUSE SHE FUCKING WANTS TO GET BETTER and if these are the diagnostic tests necessary then she just needs to manage, somehow. But she didn’t scream enough or something so it’s probably not CRPS. And people who have CRPS can’t tolerate clothes touching their skin. When in fact one of the very points we made is that SHE CAN’T tolerate clothes properly – I had to make her a floor length, loose nighty out of a t-shirt and old skirt of mine because she can’t put on pyjamas, and she doesn’t want to fucking freeze to death. And her choices of what to wear in public are restricted to two old dresses of mine that are very loose and flowy and, again, floor length on her which she fucking puts up with because IT’S FUCKING WINTER AND EVEN SO, YOU CAN’T GO AROUND IN PUBLIC WITH NO FUCKING CLOTHES ON. But anyway. She really wouldn’t be able to tolerate it if it really was CRPS. (I didn’t realise that illness comes with a built in breaker switch that makes it cut out when you reach the level of what you can tolerate.)

And she’s had some problems with incredibly heavy and painful periods which we have been trying to alleviate somewhat. She’s been taking a BCP and it helped a bit but not hugely so it was switched for a higher dose, which still didn’t give enough relief so we need to see a gynaecologist, but when you have all this pain and you have other kids to look after sometimes things need to get prioritised and we sort of only just knew in the last few days that the increased dose wasn’t doing what was hoped. But anyway. Because they looked at her whole body and she is having her period right now and they pressed on her sides and her lower back, it was hurting her. But they didn’t really ask about that fully and just assumed it was all the same as the other pain and the leg stuff, and parts of her upper back hurt because it’s a real fucking effort for her to walk and she uses the crutches to make that possible like we were fucking told to do,
and that’s not how CRPS works. And ok: we might not have specifically said that is different and not part of the same thing but I thought it was pretty fucking obvious when they are looking at her stand and walk and how she has to lean her weight into the crutches that it was the effort from doing that which makes her back hurt, not the fact that the same pain in her legs is in her back too. These are people who have fucking degrees in this shit. So doctor guy was saying stuff about “what is happening when a woman menstruates” in a really “explaining shit to young kids” tone and I really wanted to fucking yell at him. Hey, PENIS FACE. WE *ARE* WOMEN. WE FUCKING KNOW SHIT ABOUT MENSTRUATING. But anyway, the punchline of this was: stuff with periods = not CRPS.

Half of the people we talked to in the morning were people who are there to address how shit is affecting you. Social worker, psychologist, psychiatrist. And so of course we mentioned that how it is affecting us is that IT FUCKING SUCKS BALLS to be in pain or IT FUCKING SUCKS BALLS TO SEE YOUR CHILD/GRANDCHILD IN PAIN. And when you have some anxiety and/or depression thrown in there, it can be really disheartening and demoralising to have to do this every day. I mean, I am sure it is fucking hard even when you don’t have this on top of it. But this certainly does not help, either. And Stephanie of course admitted to her psych lady that she feels like crap because she can’t fucking do anything and hurts all the time. And I said I feel like crap because my daughter feels like crap and hurts and can’t do anything and gets sad and angry. But I kind of thought that it was obvious that she feels that way BECAUSE of the pain, not that she has the pain because she feels that way. She didn’t feel that way before this. She had anxiety related to tests and assessments at school and normal teenage things but not just general feeling like shit.

There’s skin stuff too. Where her skin gets all blotchy and mottled or very white or very red or very hot or very cold. She mentioned at one stage that she’d used our thermometer to take the temperature of her leg when this was happening and it was two degrees higher than the standard reading. Well, some people with CRPS have dry, shrinky, scaly skin that is almost retracting and disfiguring their extremities and it’s pretty nasty. And readings have shown differences of four or five degrees compared to the rest of the body. So clearly, her single reading of two degree difference measured with a thermometer designed for foreheads in a home environment is a strongly reliable piece of scientific evidence that what is happening is not CRPS.

What I feel like he basically summed it up as is: because you did what you were told to prevent the symptoms from becoming worse and have actually succeeded in preventing it from becoming worse, I am actually deciding that you don’t have this condition that other doctors have diagnosed you as having. Also, because of the menstrual stuff you are clearly suffering from hysteria and you’ve all told us you have a family history of being totally fucking crazy, so probably you just are totally fucking crazy and making your body feel pain because you have too much emotional and mental baggage to fit in your head and it has to get out somehow. Oh, don’t worry, I know you are in pain, I’m not saying that you’re not. I know that if we did like a brain MRI or something we would absolutely see all the pain areas lit up like a Christmas tree, and so we would know that you really are in pain but it’s because you’re making it do that. So you need to see some mental health professionals who talk to crazy people, not a real doctor like me who helps people with, you know, physical diseases that they haven’t given to themselves. But don’t feel angry or sad or frustrated because I have really actually done you a big favour by saying you have to start over being referred to yet another different set of people because when you see them they will really be able to help you so much better than I could because I am an insensitive fucking twat with no fucking bedside manner. And if you’re done crying and feeling stunned and dismayed and hopeless and making me feel uncomfortable, could we move it along now because your assigned appointment time is over.

What I feel like they told us is: you’re all crazy and clearly everything that is wrong with any of you is a result of you being crazy because it never happens that being crazy develops out of traumatising and painful things happening to people. It’s just you crazy pathetic people who can’t deal with shit and so you make it worse. Of course you don’t mean to, but that just happens. And it’s unfortunate that you have all these symptoms of a condition that another doctor and my own colleague have diagnosed but they’re wrong and I’m right and move along, now, please. It probably won’t be a long wait until you see the next lot of people but I really can’t say.

quote from harry potter

I think when we came out of there yesterday we were all feeling a bit stunned and a bit speechless and not entirely understanding how the guy had reached the conclusion that he did, despite asking him to explain it several times. And so, so let down that we had expected to finally get some real help and instead we get an undiagnosis and redirected yet somewhere else.

I don’t understand how this doctor expects us to just accept his conclusions without question, when he has just sat there and told us that everything is very complex and the other doctors we’ve seen didn’t fully appreciate how it was all complex and said it was one thing when he says it is not. If you are sitting there telling me that the other doctors, who we have given all the same information to, who have done the same examinations, asked the same questions.. if you are telling me that they are fallible and wrong and yet you don’t have any concrete and quantifiable evidence to support your claim that you’re right.. then why should I believe ANY of you? Why should I trust that any of them know what they’re doing? Why should I put my trust and hope in the next person when so far all we have gotten is nowhere? And why, if you acknowledge that Stephanie definitely is experiencing pain, and you think it’s because of fucked up shit in her head, and your team – the PERSISTENT PAIN team – has psychologists and psychiatrists on it, who as I understand it, are supposed to treat and help to fix fucked up shit in people’s heads… why is it that you won’t help her?

Having had a bit of time to calm down and think about stuff, we have come to the conclusion that all we can really do is keep doing the best we can like we have, and wait for the referral to the Child and Youth Mental Health Service to go through and hope that they really can do something to help. I don’t know if Stephanie does or doesn’t have CRPS. Either way, part of the treatment for that is supposed to involve a lot of psychological work in order to make your brain happy (or not stuck on dealing with bad things) so your body will be happy. So, we do that anyway. And hope that it works. Just, having no idea when this will happen and how long it might take and being back to square one in that we don’t really know if or when Stephanie will be able to return to “normal” is hard. How do you hope and look forward to something that might be in a week or a few months and might take a week or might take a few years to make a difference?

Like the blue fish says. Just keep hobbling.


pain and stuff

Part of this thing that Stephanie has is that it prompts a lot of introspection and reflection on my part. There are aspects of her experience that I can relate to and some that I really can’t. I think that is one of the biggest problems for her, that so many people just have no reference point for understanding what it is like that they just do not know how to treat her, act around her, handle her. Even some of her friends unintentionally hurt her and I know that it is not because they want to. It is just that what is happening to her is so far outside their own experience that they are unable to adequately adapt their thinking in order to adjust to her new needs. And, well, it is really fricking difficult when sometimes even the brush of air molecules that you displace as you move around her prickles painfully against her skin.

She is having trouble getting used to the lack of freedom that comes with being less able than a normal person. And this is somewhere that I am trying to help her because I have learned over time to hold myself differently, sit differently, lay differently, stand differently, just do things differently to try to avoid putting a strain on my body that it can’t handle. But even this is difficult because I have been fortunate that I understand the weakness my body has and can make the adjustments in order to minimise and delay how it affects me. (To a degree. X-rays I got last year show that the state of my spine/vertebrae is about what you would expect to see in someone around 20 or so years older than me.) I am lucky because while I have a chronic condition, I am in the earliest, lightest stages of it taking away from me. I am unlucky because I know it will get worse over time and there will come a point where there is a limit to the relief I get for having learned how to move differently. This pretty much happened all at once for Stephanie. One day, she didn’t just have a kind of sore knee.. she had a really fucking painful whole leg. And then, one day, she had painful two legs.

Yeah. So much fucking fun. 

We have had a consultation with the pain specialising doctor now. I liked her. She didn’t fuckery us around like the dick at Redlands (I am not sure if I wrote about him. He was as much of an asshole as you could possibly get. He spoke down to us, told us that just because something had been diagnosed by another doctor didn’t mean that she actually had it; he criticised and belittled his colleagues – told one of them off for talking to us about the “patella” because that’s a “medical term,” not a word for everyday stupid people.) Anyway, she did a history and then had a look at Stephanie’s legs and asked her to move them and she could immediately see the mottling and stuff and moved on to talking about how we can try to fix it instead of trying to do reflex tests on a person who feels extreme pain at the slightest touch. She immediately and casually changed Stephanie’s medicine to an anticonvulsant which was amusing to us because the GP was like “no way!” at going that route because of her age. It is obviously just a thing outside of his area of comfort and expertise whereas it certainly isn’t for the lady handling kids with chronic pain all the time. She also explained a little about how we would now start seeing the pain “team” which consists of a physiotherapist, an occupational therapist and a psychologist. The way to “cure” the CRPS is to get all the misbehaving nerves to reset themselves. The way to do that is to work up to desensitising them, i.e. using them on purpose even though it really fucking hurts; while the psychologist keeps you from going mad and the occupational therapist teaches you and the rest of the world how to interact with each other in the least painful way in the meantime.

I think the doctor may have somewhat overestimated the efficiency of the administration side of the hospital, because she said that we would probably see the team people within a week but it’s been 10 days and we haven’t even got a letter with appointment info yet. I have started working myself up to having to call next week to find out what is going on. I might be there by about Tuesday.

It would be good if we could at least have seen them for the first time before my mum leaves again at the end of next week. I don’t really want to have to go during school holidays with no adult back up and Abigail and Kristian along for the ride.

But time appears to grow short.


pain and stuff