If you look back, you might see a few posts about the time I called the police and got screamed at because some guy was randomly scraping paint off the front of my house, and the police said it was strata so my male neighbour knowing about it was enough, even though I had already spoken to my landlord/parents and strata had been unable to confirm this was a thing that was meant to happen. Yeah.
TW: privacy, dentists, grief, references to inter-family abuse
So, I managed to get home for my grandmother’s funeral after all. This came about because, by virtue of not driving the six hours each way to collect me, my mother attended the meeting with the funeral director and took the responsibility of organising the priest and so on. (It was also necessary that she attend since she’s the one who has the lease on the grave, but such practicalities don’t actually rate as necessary when one isn’t thinking rationally.) A few days later, she offered to pay for a flight down, and then couldn’t understand why it didn’t cost several thousand dollars.
Then she admitted that she hadn’t wanted me to come because she thought the funeral would be too short to be worth it and she didn’t want me to remember it badly. (Or something, I mean, seriously?), and then that she should have handled arranging things better rather than letting everyone else take over, after it came out that other people were upset about it too, but too afraid to speak up, because about the only thing that part of my family doesn’t do to each other is resort to physical violence.
TW: female body issues, anxiety
I am officially old enough to be taken seriously when I make a decision about my body. You know, the one that is like ‘I do not want kids ever, I will kill myself if I have another period ever, the wacky hormones this body likes not having controlled are making my anxiety worse and I would like them to go away, please take out the thing that makes them’. It wasn’t the most perfect appointment – despite telling me to make the appointment myself, the GP sent the referral anyway, so the appointment was made for less than two weeks away (which is now today, because I totally abandoned the internet for a week in favour of Final Fantasy XV, and there will be a post on that so if you haven’t finished the main story, get on it), and my psychiatrist didn’t know about it and had two days to send the ‘this is what is needed to facilitate best communication and this is where we are at in diagnosing things as either brain or not-brain’. Naturally, that didn’t arrive, so I got there and had to type on my phone, which means all statements must be Twitter-style brief and concise, which I am terrible at. Luckily, I took a summary of everything-since-I-was-12 and that answered most of the questions, so it wasn’t a disaster.
However, despite being old enough to say ‘this is what I want’, I now have to see not only my psychiatrist and return to the GP to get both of them to sign off in writing, I have to see another psychiatrist and another gynaecologist, so they all can sign off. And I can only have half of what I want (a partial hysterectomy, because they won’t take out the ovaries because they make the hormones which are causing the problem), anyway. And you know, it’s the law, so we have to cover our arses, you know “in case you change your mind”.
Which, I won’t. Obviously.
So now I have to pay for all this.
The good news is that I can, kinda. Medicare pay for some, private health pays for some, and the rest comes out of my shiny new disability payment. Turns out, I didn’t have to go to the appointment in the first place, or something, or something else, which I don’t know because I can’t call them and I only know this because I got a response to my third complaint which said “your issue has a resolution, please call if you want to know more”. And then! Money! In my account! Enough to pay down my credit card, pay for the gynaecologist, and buy a Christmas cake. And I can send presents to my family now!
And I’m just going to go back to Final Fantasy, because I am being very calm, because my head hurts and I’m terrified this won’t happen before I either need a new Pap smear, need a new Implanon, or get the period-after-the-Implanon-has-been-in-for-a-few-months. I know it’s coming, because my head hates me and I’m bloated rather unevenly and I haven’t even been able to keep my bi-weekly vegan alfredo down. I don’t know when.
But apparently, according to the gynaecologist today, I look 21, so. And I’m also meant to stick with my current pain relief regime because it’s good for me. You know, the one I routinely have trouble purchasing.
So, today was meant to be my DAM. Remember, last time I got there and they sent me home because they weren’t expecting anyone? And they rescheduled the time before and sent me to an employment services assessment instead?
To attend today, I had to start getting ready at 5:30am. I left just after 9am. I got there at 10:45am, after a delightful display of misogyny in one of my breaks, because, remember, I can’t drive that far in one go (I’m actually sitting here, icing my back, because it started with the stinging red pain and if I don’t stop it then I won’t be able to walk). They told me the doctor was sick but it would be okay because they let the department know and someone will be in touch to reschedule.
It’s been four months since I applied. This is a mandatory, statutory requirement. It shouldn’t have even taken four months to get an appointment.
But, you know, they sent me to the right place this time? Last time it took six weeks for them to reschedule. I can’t wait another six weeks. The cynical mother-voice is like ‘they’re making it hard so you quit and get a job because they don’t want to pay you’. Which isnt right either – I havent been able to knit in two weeks because of the pain, and that’s knitting, the easy self-directed mini-business that’s been my ‘plan’ every time someone asks about retraining. It’s no longer a thing I can reliably do. I don’t have it in me for office work – I’m not even awake long enough to put in 38 hours, let alone spend 3 hours getting dressed each day and travel on top of that. I can’t hear now, which nobody cares about. I’m in the 15th week of a fever. Because of the slight issue with accidentally offending someone because I pointed out it’s not okay to randomly sexually harass people, my entire routine is upended because now I not only have to go elsewhere (more expensive, and, where is the money coming from? It’s not, is it?) but I have to go twice a week, because that’s how they do it. Or something.
The psychiatrist continually tells me that people with my condition know instinctively what they need to get “better”. I know I’m not getting “better”, that I need to adapt, to have my routine and sleep at the best time for me and to, above all, not get dragged all over the entire city by doctors who think that ‘not working’ = ‘available any time at short notice’. I need to be left alone.
Clearly that’s not happening, becuse the psychiatrist contradicts himself by pressuring me to try some new thing or another like five minutes later.
But, like, four months? For a DSP application? Even if I could eat, I haven’t been able to afford it for half that time. The kind of people who are affected by these delays are exactly the kind of people who can’t find alternate income to make up the difference, even if they were allowed.
And of course, nobody told me in advance.
You know, I honestly thought that the ‘you must show ID to get your meds’ thing had gone out, because I went for a month without being asked, and having literally no issues at all in getting it.
Then, last week, on the way to the show, I was asked to show ID. The pharmacist acted strangely, staring at me from the back, and making motions to come out from the back, except she didn’t, and I got my meds and went on my way. Then, after I had to stand in line for three and a half hours, I was grateful to not rely on the single dose I had left to get through the night. Trust me, standing on various configurations of pee-stained paving, cement and lino-covered-cement for that long, while wearing a corset that still doesn’t fit right because it was broken in before the IUD-induced breast explosion, and therefore doesn’t give quite the support it used to? Yeah. I still haven’t recovered.
So I had class today, and class is generally my standard point of ‘get meds’. Today, my regular pharmacy had run out of everything but the 12-pack. Now, let’s be real, in my current condition, with everything that I need to be functional for, that’s a day’s worth. If I’m lucky, it’s a day and a half, in between the parts where I make it a whole eleven hours before passing out for six, because the pain overwhelms everything and then I have to deal with the consequences of passing out on carpet-covered-cement, and the occasional ‘oh wow it’s been four and a half hours since i took it!’ generally involving either lost time or ‘yeah, i can’t stand up right now’. Now, I have half a packet still at home, so it will get me through until the next time I leave the house, because apparently, even though shows are a disaster and I swore them off, my presence at concerts my friend is in (my only RL friend! wow!) is still mandatory, so I have to go out on Friday. I can get to Friday.
So, with my insurance comes a discount membership for Other Pharmacy. I stopped going to Other Pharmacy a while ago, because their terrible service involves overcharging for bandages (three small packets and one big packet? sure, let’s scan four big packets!), denying medication if you are purchasing a pregnancy test at the same time (it might hurt your baby! even though you’re infertile and it’s not for you!), and my personal least favourite: ‘we’re open every day so you can just come back when you run out’ rather than letting an adult manage their own OTC medication (and yes, we are talking about what is legally OTC medication).
But today, I braved it, because if I could get another packet, then I could go straight to the show on Friday, straight home, and get through to Monday. I’m a huge fan of forward planning and minimising times when I have to get a corset and get the car out and go to places where I get treated like less than a person. I also prefer to have a spare packet for days when I run out but I’m not capable of going out, which if I had another packet, I could put the 12-pack aside for.
So I chose a thermometer, because mine is old and this was given to me before digital thermometers came with replaceable batteries, and tracking my temperature on migraine days allows me to manage them better, and went to the counter with my note (remember, I can’t talk or write, but I can hear mostly fine, if I can see you and know you’re talking). The assistant took my note, took my id, entered it into the computer, and then said ‘Are you waiting? Will you wait there? Wait there?’, which was weird to me, because the pharmacist literally had just told her it was okay to give them to me and to put it in the computer. So I waited. Right there. Leaning on the counter, so my back wouldn’t hurt quite so much, and I could play on the table with my fingers, which I never noticed I do before recently and now it’s like all the time (yes, I’m probably autistic, I was tested in school but nobody told me the results, so all I know is that I got special assistance and skipped a grade). Eventually, someone else came out, and said they wouldn’t give them to me, because “you’ve been taking them a lot” and “you had some last week”. She pointed off to the side and wanted me to go with her somewhere. I just kept signing over and over “I have a migraine I can’t talk”. She wrote down “has been too soon cannot dispense” and shoved the paper with me at a pen. I wrote back, “have migraine need now”, which obviously looked like chicken scratch. She went to the back and got the original pharmacist. “She’s stupid, doesn’t understand the message,” she said. The other pharmacist came out. I signed again. “Yes, I know you can’t hear, honey,” she said. “We can’t give it to you. You can have this instead. We need a letter from your doctor.” I tried to write that I have seen a doctor, but they didn’t understand. The other lady had retrieved a packet of Maxigesic, which is paracetamol + ibuprofen. I signed that I am allergic to paracetamol. They still tried to make me take it. I handed them the thermometer. “No, you pay at the front,” she said, and tried to hand it back. I ended up shaking and crying on the floor. Not a single person asked if I was alright.
Eventually I made it across the road, to Historically Really Nice To Me Pharmacy. The assistant there took my note and brought back the pharmacist, rinse, repeat. The best she could do was a 12-pack, and she would note on the system that she had recommended I see a doctor. I had to turn off my music and type to her on my phone, because she was “can you write? is there someone to speak for you? i can’t understand you”, and so the ambient noise was prickling at my spine, sending spider-spikes up into my brain. My mp3 player died over the weekend, because when you’re dissociated and have a migraine and are in so much pain that you pass out rather than feel it, you do stupid shit like put your mp3 player in the washing machine.
Eventually, even though I did my best to explain that my doctor assumes that as an adult I’m actually capable of managing my own medication (and indeed, if not for being sent home from hospital after surgery without safe pain medication, and having to deal with my body rapidly changing, therefore causing more pain… I would still be at the one packet a week I was before, rather than the 3 I am now, which is actually an improvement on what it was), and they don’t prescribe it anyway as it’s an opioid and, therefore, addictive (even when a specialist tells them to, actually – I have tried, trust me, because it would be so much easier to have people believe I take it for pain if it was prescribed, and prescriptions require less talking). “They will prescribe it to you,” she said. “Or a letter. A letter is fine.” Because if I took in a letter, they would totally believe I didn’t write it myself.
But she was also on about “you had some last week, that shouldn’t have run out yet”. Let’s do the math, though – 6 tablets a day x 5 days = 30 tablets. Wednesday to Tuesday is 6 days. I have had pharmacists advise me to take it for 3 days, take a day off, then take it for 3 days. In no way, therefore, is 6 days “too soon” – it’s right on the “will need to start new one tomorrow” line. And I snapped
‘what record? i no consent record’ i typed.
“The pharmacists should have explained to you that it’s recorded on a nationwide system,” she said. “Didn’t they do that?”
No, no they did not. Until today, I have had no confirmation from any pharmacist that the database is actually a thing, that they’re recording my activities and sharing it.
“Every time you show ID, we record it on the system. It’s anonymised, so we only do it from your license number.”
‘I no consent. Plese delete.’ I typed
But she couldn’t delete my record. She could only delete that day, from that pharmacy. I’m not allowed to access my record, either, even though it’s mine, because anonymising it means I can’t prove it’s mine. Or something. And, of course, if she deleted it, she wouldn’t even give me the 12-pack.
I took my ID back and went to class. I sat down in the waiting room, and even though I was wearing makeup, I really did cry. I vented to my mum and on Facebook, because this is wrong. I have a medical team and the right to make my own decisions based on their advice. A pharmacist shouldn’t be able to make judgments based on only a computer, nor on their limited grasp of the facts. No matter what anyone says, I am not an addict, the same way needing heart medication doesn’t mean my dad is an addict, or needing insulin doesn’t make a diabetic an addict. If I wasn’t in pain that routinely affects my ability to function, through making it far too painful to stand, to making my head feel like I’m wearing a bubble with crushing air pressure, to being unable to urinate, to not even being able to knit or type, to not be able to stand or bend or sit then I wouldn’t need pain medication. Except I am, and I do. Funny thing, knee pain – they just decided surgery doesn’t work, and they recommend pain medication as needed. …
So Friday will be interesting.
So then I get to class, and I explain that my mouth hasn’t been working properly and I bit a hole in my lip instead of my food.
“You know, you say you have trouble and all that, but you’re fine in here.”
Because, you know, half an hour before, I take my meds, I meditate, and the rest of the week I spend resting because all my energy has to go into being in there, and not being harassed. It’s always something – my clothes, my hair (I always wear it up now, because the receptionist cornered me in the classroom and said she wanted to get me drunk so she could play with it. I doubt having a bun helps when I say I have a migraine, but having a braid on my spine is worse) my shoes, my makeup. If I don’t have a panic attack beforehand, I’m dissociated, or I’m so stressed that I go into survival mode, and my brain thinks I still have to pass, and then coming down from that is like subdrop amplified.
“Why weren’t you at the show on Sunday?”
Because Wednesday was terrible. Because I went out on Saturday to take photos of the knitting exhibit at the Show and a volunteer there prevented me leaving until she could tell me off for having an ankle brace. Because my mp3 player was dead and my phone is not the best substitute. Because it was at the venue where I once reserved a table and they gave it to someone else, and the tables are behind the standing area, so I wasn’t able to see the show. Because I was asked to be in the show and then not allowed to be in it because “it’s too hard for you with your condition”. Because I had to choose between being there and being here. Because asking me to get somewhere at 11am on a Sunday means I ahve to skip an entire night of sleep, and I still haven’t adjusted back from the psych-eval-that-wasn’t.
I’m starting to suspect, if I could just be left alone for a while, no doctors, no class, that things would be much better. As it is, though, there are so many people with their idea of what ‘recovery’ and ‘functioning’ look like, ideas which differ so radically, that I don’t have room to actually plot a path that satisfies everyone, is within my ability and finances, and doesn’t come with the very awkward squarely-on-a-trigger concept of ‘if you do not meet our standards you do not get paid’, because that’s how disability and workers comp work. As it is, there’s so much pressure, so many external standards, that there’s no flexibility. I can’t go get meds and have three packs so that I can stay home for a week and actually rest, so I have to actively alter my sleep cycle, which means more pain (seriously, this is a thing), just so I can get meds for the pain so that I can go to the psychiatrist and get yelled at for whatever thing I haven’t done right/enough “but [he] find[s] that people know what they need”. I don’t need to talk. I don’t need email. I need a job that lets me work flexibly from home at night for a few hours a week, which doesn’t exist. I need to have a decision on DSP. I don’t need to be harassed about my medication or be sent to allergy testing for being vegan. I need to not have to be on Facebook every day and to not be harassed if I am not online ‘enough’, whatever that means. Human beans can survive without internet, without phones. I don’t know why everyone else didn’t learn to fingerspell in kindergarten, but not being called stupid for not talking would help, as would not assuming I can’t hear being called stupid because I can’t talk. Touching isn’t necessary either; it should be optional by default.
On the plus side, I received a very apologetic email from the ABS last week, with the correct census link, and a promise that I won’t be fined (which, well, it’s still within the window to fill it out, but now I have it in writing, in case that man comes back and tries, I spose). So now I exist again, as a genderfluid disabled person who identifies as Irish Catholic, speaks Greek at home (which is actually true, not trolling, except for the part where I suppose speaking implies actually talking…), does not work due to long-term disability, and needs assistance. All that for a five minute questionnaire, which would probably have been more functional on SurveyMonkey.
And my new mp3 player arrived today. I don’t have money to buy food with, because to get one with buttons rather than that wheel thing which is impossible for me to use because, you know, it requires seeing and fine motor control and stuff like that (I did actually have the use of an early iPod, so I know this), cost an entire fortnight’s ‘allowance’. It’s a necessity, because ambient noise and sound and anxiety, but I don’t know when I’ll buy groceries again. Or, like, anything else, apparently. Did you know that the price of OTC meds varies depending on how far you are from the CBD? The 12-pack today cost the same as the 30-pack yesterday. How stupid is that? I wonder, if by some miracle, I do manage a prescription, whether it would come down.
(For the record, if you put Sennheiser CX300-II headphones through the washing machine, they will still work. I already adore Sennheiser and all, but that is amazing to me.)
aka Disability, woo! pt n
When you can’t talk, and you’re angry, you can’t just go yell at people. Otherwise, I wouldn’t be typing this right now; I’d be waiting in a line at Centrelink with the whole thing blowing up until it came out at a person.
Sometimes, when I’m pissed, it comes out physically, like how I wanted to smash the overlocker the other day and ended up smashing the door frame and a few other things instead.
And sometimes, I snap. It’s the rare time that my brain works the way it did before, when not talking was a sometimes thing (seriously, the doctors are still pretending that it’s a sudden thing, because it makes them feel like they can fix it, but it’s been happening since I was at least, you know, eight, so they’re just dreaming) and all the information went in and twisted around and came back out in order and clear and connected, all the things that made law perfect for me even though it was everyone else who wanted me to do it and not, you know, me. I’m perfectly calm. Things look like a flowchart, a series of if… then… statements that connect and swirl, and I feel in control.
This makes me dangerous. People don’t like me when I’m dangerous.
So, as you know, about a week and a half ago I received a letter with an address and a time, and it came with the usual ‘this is a notice under social security law, if you do not attend your entitlement to benefits may be affected’ note which fails to actually cite an actual law to back it up (because most of the staff don’t actually know; it’s largely handled in regulations and policies and not all of it is public-facing). It was scheduled in the morning, telling me several things:
- whoever made the appointment either failed to notice, didn’t care, or was not informed that I specifically requested afternoon appointments because of multiple diagnosed medical conditions which affect my sleep patterns;
- having multiple diagnosed medical conditions which affect my sleep patterns is therefore not an ‘acceptable reason’ for rescheduling;
- they are not interested in having me able to participate in the appointment because obviously, attending means I will be exhausted.
I also gathered, from the short notice, that they do not understand that it isn’t easy to arrange a support person (someone who may have to travel, take time off work (and would therefore need a medical certificate… even the people who are professional support people, like lawyers or advocates, generally need more than a week’s notice, which of course I know from personal experience). That is also not an acceptable reason to reschedule, even though at the last appointment I was yelled at for not having one for about twenty minutes. I know this because I actually tried to get one rescheduled, a while ago, and was told that it was not good enough as there was enough notice. (what is it with people assuming that no paid work = free time central? I did actually have to cancel things to attend today).
So, because I was tired, and my brain feels bigger than my head and light makes it have stabby pulsing pains, and my stomach is so tender and my back is shocky just from one layer of clothes (let alone the four for outside clothes), and because there was a tiny incident on the way there… I got lost. So I know I was in the right place, because not only did I get directions off Google Maps before I left, I was following the street directory. There was a psychologists’ office there, even. But, apparently, not the one I was meant to be at. They weren’t expecting anyone who signed. “Is someone coming to talk for you?” they said. Then ran down all the names of the psychologists there, none of them matched the letter. One of them ran to the one next door, who were also not expecting anyone. The address was on the window.
… I ended up going across the road, getting my meds (they didn’t ask for ID! I am hoping that entire thing was scrapped because it did not work, but honestly, it’s probably because I really do look that terrible today), and coming home.
If I could talk, I would have gone down to the office and made a scene. But last time I was there, they wouldn’t let me type, so that was pointless.
Instead I came home. I have ice on my ankle – I sprained it a few weeks ago, and it doesn’t like that I’ve gone from going out once a week to every second day (last week it was every day). I am deciding what to say.
Now it is time for the if… then… part
If they decide that missing this appointment, which they made for me with no respect to my stated needs regarding time, and apparently sent me to the wrong place for, means they reject my claim, then I can appeal. I made a good faith effort to attend and I have done everything else they asked. And as I said, before, tribunals are my territory.
If they schedule another appointment, and send me a letter in which they yell at me for not attending, then I will cry for the entire short notice period, and I will go walk around until I find the right office, and reschedule it for a time that doesn’t require me to skip a night’s sleep, and if they deem that not reasonable, then, well, I did try. And if I miss it, or you know, pass out and sleep through it, then they had notice, again, of my condition.
If I write a letter and send it to them, because I’m not making it to the office now on my ankle and with my head how it is, then they know that I tried and to double check their mail merge to make sure the address is correct. And, they have a record that I tried, so if they reject my claim, then it looks pretty stupid.
At least, I hope.
But I know IMEs are frustrating. I know this from both sides. Why not make it easy by, you know, including a map? Or, like, the phone number of the actual office and not the central cube monkey interstate phone number? I could have sent a message to the office that way, or had my mum ring for me (and put up with the consequences). Talking people could have just rung up and been like ‘yeah I’m at the lights on this street help where are you?’ which I know people do because I’ve been the one giving directions.
And, naturally, I have things to do now so I can’t go to sleep. If I do not make my regularly scheduled fandom post, I will get emails asking me whether I’m dead. I would dearly like a break, but that literally happened to the person I took over from, who was meant to be gone for a few weeks (it’s been six months). My boys need me tonight, although I’m not allowed to have a favourite player any more because if they get injured I end up with the same injury and it’s happened too many times now for it to be coincidence, though I don’t really know why.
So yeah, that happened. The reason I’m calm? I’m about to crash, massively. The simplest summary for my triggers is ‘being yelled at and my money/house threatened for things that are not my fault’. This hits that. And when I crash, it will be a mess.
That isn’t an if… then… at all.
TW: reproductive medical stuffs, depression, anxiety, bureaucracy, suicidal ideation, rape, asexuality/genderfluid/trans* issues, eating disorders
I have, this entire time, been denying being depressed. I wasn’t. My brain shut down and routes things the wrong way. Technically, it’s not possible to be clinically depressed with my disorder presenting the way it is.
The Mirena came out, and within a week, I was bleeding. (Yes, I know, it’s not blood, but it not being blood is worse, okay?). For two weeks, I have been avoiding going to the toilet because I see a pad and I cry. I also cannot throw out any rubbish from the bathroom because I am missing a necklace and if I throw anything out I might throw out the necklace. It’s not a great combination, as you can imagined. Initially, the Mirena was meant to stay in longer, but it was affecting me so much that was impossible, and now here I am, with a two-week long period after not having one for nearly six years. I thought I would be suicidal. I prepared for that. Instead, it’s something much more insidious – something that very much resembles depression, but isn’t. It’s a combination of dysphoria and dissociation that very much resembles how I was when I left work in the first place, but now with bonus not talking and random times where I can’t walk. (When I left work, see, it was just during panic attacks. It was dealing with workers comp, and my former supervisor harassing me outside work, that sent it to how it is now. All this at the same time as coordinating my brother’s wedding. How half my family doesn’t know I’m sick is amazing, really. They are exceptionally clueless, but still.) The whole point is that emotions are sent into the communication part of the brain, so I don’t feel them. Before, it just meant that my brain shut down for everything, and they thought it was anxiety and wondered why the meds didn’t work (I tried one of every class. I have a list of “unusual” side effects that are mostly because these things are meant for things I don’t have. Like how the migraine medication gave me migraines because my migraines are hemiplegic and it was not formulated for hemiplegic migraines. “Finish the script, they’ll start working,” the doctor said. Yeah, they did not. I went through six months of triptans in four weeks.) This is because, over time, and with everything I have had to do, I have transitioned. It is no longer acute conversion disorder, in that it’s a thing that presents under certain conditions for a short time and then stops. It is functional conversion disorder. It is there all the time and a thing I function through. It’s not going away. All the things are going through the wrong parts of the brain – the stress, the tears, the angst – and affecting my communication and movement. It’s not a snap decision, an overwhelming need or a sudden feeling of helplessness.
No, this is planned. This is logic, somewhere that isn’t meant to be logical, and it says that if the bleeding doesn’t stop by Tuesday, and if moving around makes it worse when I go to speech therapy, then it’s Plan A. If it actually stops, instead of being infrequent and unpredictable, then it’s Plan B. These are plans that hang around half-formed, and get put off by “I am going to a meet and greet in August so I can’t kill myself until after.” Except, that doesn’t matter, because now there’s a thing. All those stories about artists pointing out people who are using their phones, or not paying enough attention, that’s been me in the small seat. Plan A looks a lot better than putting it off in favour of abject humiliation by a stranger, for which I am trading food money. This is ‘remember when you went to meet Adam Lambert, because if you bought a photo op you got early access to merchandise, but you didn’t get early access to merchandise, some lady in the line decided you were deaf and took over and signed for you until you signed back with the middle finger, and then the organiser gave you special attention and explained to Adam that you couldn’t talk because you were deaf so it didn’t matter that you practiced so much because you were so humiliated that nothing would have come out and you had to run away because he said you looked beautiful after everyone had been telling you off for wearing a corset and trying to play with your hair, then you had to wait in the crowd for merchandise, and because you asked about seating you got stuck in the disability section and couldn’t dance and people kept pushing you because they couldn’t see and they thought that was justification for patting you and pushing you; that will happen again, so don’t wait for it’.
Plan B is longer-term, of course, dependent on another outcome.
Plan B is if I do not get disability.
When I was preparing my application, I added my voice to a group of people discontent with the application process – the length of time, general inaccessibility, lack of updates. Except some lady picked up on mine, and amplified it, so I was asked to provide my feedback directly up the chain. By this time, I had been forced onto unemployment as an “interim payment”, meaning that every second Thursday morning at 12:01, I have to log in, and spent upwards of two hours reporting my income. I am not allowed to work. I have no income. If I do not log in, because I am asleep, because I have a migraine and can’t see, if my hands don’t work, I do not get my payment. This means this is a source of anxiety, and it is a trigger, because the concept is “but you have to or you won’t get paid!”, and that is what people told me, over and over, when I told them I was being harassed and bullied and asked for help to get out. The first time, it didn’t work. The page kept disappearing, and I tried another browser, another computer, and when it finally came back I pressed the button and cried myself to sleep, then slept for ten hours. Of course, there are no problems with the website, and if you go in, they just make you do it there, with a person standing over you to talk you through it, because clearly everyone is three years old. The second time, it wouldn’t let me fill it out properly, meaning I had to lie to get them to accept it, like how I had to lie about all the work I was doing illegally, because it was, you know, illegal, and if I told I would be in trouble. (To this day, I don’t think anyone knows how much I did that I wasn’t supposed to.) I sandwiched it with a bunch of other unpleasant things, but this dissociative fugue thing had already started, so all I got was a headache, and tears, and wondering why it wouldn’t just let me click the button. My psychiatrist was very explicit with me – he does not want me on unemployment, because I can’t cope with the requirements and that will make things worse, not better, not the same. Obviously, dealing with it is part of how this is happening now.
So, when I gave my feedback (in an email, so it was not exactly easy. I do email once every couple of days, and sometimes I just mark everything as read so there are no notifications but I don’t read them, because I can’t), I was as clear as I could about how each part of the process affected me. One thing that I mentioned was the scheduling of a mandatory medical assessment. When I walked my application in (the only way to lodge it, of course), the lady I saw tried to make the appointment for me, and she was not allowed. I received a letter, eventually, four days after it was generated. My appointment had been scheduled in the morning. I have DSPS. I also can’t sleep at night, because invariably, I wake up before 4am, and I can’t get back to sleep, because I have to be awake for the alarm because if I am not at work by 6am I will be in trouble because the office won’t be set up for the day. To get enough sleep, I have to go to bed after 6am, or it has to be one of those days where I sleep all the time. Morning appointments mean no sleep at all for an entire day – I will get up at 12pm the day before, and not go to sleep until 6am the day after. This is why the lady took down that I need afternoon appointments, and not on the same day as speech therapy, because that is also impossible because of the time I need to prepare.
I explained that, and pointed out that the short notice (compounded by the digital copy taking four days to arrive) made it hard to arrange a support person as well.
Among the other things I was told (we don’t do email because it’s not private, so you have to involve total strangers because we say on our website that you can use the relay to call us!), they said they could reschedule the appointment, and had an entire paragraph warning about how if you do not attend this appointment it will delay the processing of your claim. I wrote back, because that is what they said to do (and email is exposure therapy, and I’m trying really hard, but it will always be a sometimes thing), and I was slightly sarcastic, and said that I would prefer it rescheduled so that I could actually be conscious while attending, and these are the times I gave the lady.
A paper notice of the original appointment arrived the day after, so I spent the weekend wondering whether I was meant to go or not. As it turned out, I wasn’t able to, because my brain broke down under the strain and then I started bleeding. So.
I received three days notice of the new appointment. It was at the same time as the second followup with the gynaecologist, the one I’d been trying to cancel anyway, only to find that their office was locked during business hours (so I couldn’t deliver a note), and they didn’t have email (what?). I managed to cancel it by having someone call for me, and the receptionist actually thought she was me, even with the whole not-able-to-talk part. But it was cancelled, and not rescheduled, so that was that.
The only reason I slept on the day was because my sleep schedule got out of whack while adjusting to attend the morning appointment, and with the Mirena coming out and the period, I was back to not being able to keep down food over the weekend and ended up with five days in a row of 18 hours of sleep. When I woke up, I knew what day it was and started shaking. I spent an hour on simple makeup, because makeup applied in a sufficient layer makes it so that I cannot cry in public unless it’s really bad (like, say, bumping into the man responsible for the concussion that exacerbated this in the first place, or being assaulted for ‘looking nice I just had to tell you’ bad). I was prepared, damnit, and I was going to make the best case possible. There was a lady casing my house from her BMW as I left, but she had gone when I went around the block, so I’m not sure if she was watching me because she was waiting for someone, or was looking at the house for sale next door and ashamed to be caught, or something. It threw me. I got my meds, I got my mail, I checked that the lady hadn’t come back or broken into the house, hugged my teddy again for good luck, and went.
I found a park all the way on the other side of the shops, very easily for a weekday during school holidays, and I was able to duck in and get a drink before heading over to the government office and getting in line. It was 1:50pm, and my appointment was at 2pm.
The first sign that it wasn’t going to go well was when it was my turn at triage. See, even though I had an appointment, I had to wait in line, and get it entered in to the computer that I had arrived. Armed with a note with my ID number and the reason and time of the appointment, I was ready to combat the snatching-form-out-of-hands, I-can’t-understand-you-that’s-not-a-real-number-this-isn’t-you, and sit-down-until-the-Auslan-interpreter-is-free. Instead, she thanked me, and shoved my note back in my hands. It was entirely unnecessary, of course, and entirely ignorant of how I don’t like things being handed to me, and I can’t touch other people. I wouldn’t need it again, anyway.
There was a man in the same waiting area as me. He was swearing into his phone, so I put my headphones in both ears. I’d seen the room being prepared while I was in line, and while my suspicions were largely confirmed, I still had hope that I was wrong. After all, I was meant to see an independent medical professional, to be assessed as to whether they agreed with my doctors that I am unable to work the amount of hours stated as the threshold for qualifying for disability. I’d noticed, that morning, when writing my note, that the type of appointment had changed – I thought it was a mistake, because it’s a mandatory part of the application process, and very specific. But the employee, with his nametag and all his papers, was calling my surname when I saw him walking to the waiting area. So, not exactly a medical professional. He didn’t introduce himself as one, either, and he even had a name on the desk.
“My job today is to make sense of all this and write a report that makes sense for the person who has your claim and decides it,” he said, eventually. Nothing about being a psychologist, or a counsellor, or anything.
I was suspicious, and I was right, and I felt endangered. That’s a hard thing to describe, how it feels to be genderfluid, with a cismale twice your age holding power over you and your future, looking around. “I thought you’d have someone with you,” was the first thing he’d said. “You should really have a nominee.”
He decided he would only ask yes/no questions and he gave me a little notepad and a pen to write on. I was wearing makeup, so I couldn’t cry. I have no friends, no local family. Who I am going to ask to advocate for me who isn’t going to treat me the same way as he was? He had written Miss on the medical authority, clearly ignoring my preferred pronoun on the form, Mx. I like Mx, because I get laughed at if people use Mr, and Miss/Ms have sexual connotations around their femininity. It was hard enough to sign the damn thing – to write, I have to use my non-dominant hand, position the pen, make a fist, and scrawl as best I can, so my usual thing of crossing it out I deemed too much trouble, and because he wouldn’t let me type to him, explaining that I am not a girl would have been impossible.
He realised writing was impossible when he ignored me signing the numbers to him and insisted I write down how many times I had seen my psychiatrist. “SI”, it looked like, after a minute of arranging the pen. “Fifteen?” he said, squinting. It was fifteen after that, even after a look at my forms indicated that my writing, even when I’m biting my piercings and taking my time, with a big thick pen that doesnt hurt so much, comes out backwards and not very neat. “Twelve! So he knows you, then.” (This has progressed, by the way. When I had turned off my computer and realised I forgot to put some things in my private journal, I tried to write them down. Entire words now come out backwards, not just letters, and it’s not consistently so.) Writing anything in front of people is humiliating for me. I type to my psychiatrist, and he keeps what I write on file, because that’s useful to him, and he tells everyone he refers me to that that is best. It was even in the report. But, you know, typing to this guy was impossible, even though I brought my own to use.
Apparently, so was asking yes/no questions. Despite asking about my workers’ comp claim, which they were already informed of, he wanted to know how I had been surviving without welfare. “Savings?” “Your parents?” “What then?” I tried to type, and he told me off. “I don’t need a complex answer, it’s not relevant anyway.”
He was weirdly obsessed with something from a previous assessment – that I used to do cryptic crosswords. Obviously, this is impossible now – I can’t do paper ones. He couldn’t get that. Then he asked if I could read – something I had said in my statement of how my condition prevents me from working. I can’t understand things when I read them. If I read this back, I would not understand a thing that I’d written, and I’d be struggling to summarise it, let alone reconcile a fact from the top of the page to something here, halfway down. Typing these entries takes hours, sometimes even a couple of days, and then I have to correct my words and grammar before posting, because letters get mixed up, my hand can’t manage making capitals because it requires two buttons, and I ramble because I can’t remember what I just wrote. But! He asked if I could read, and then decided that my migraines prevent me from doing so. Not, you know, my brain being wired the way it is.
He wanted to know if I had any physical disabilities. “Do you have anything else?” is how he phrased it. Bear in mind, anything other than the reason on the claim form and in the report from my psychiatrist cannot be taken into account in the decision. It doesn’t matter that I drove there, indicating that I can drive (even though I probably shouldn’t, and the only reason I do is that public transport is inaccessible to me, as the train station is too far to walk to since the operation, and buses give me migraines), or that I do my own shopping (online or at quiet times, where they have self-checkout or the people know me. At my nearest Foodland, there is one girl who always clocks on to check me out if she is there, because she realised I can’t talk when I was searching for my missing binding ring, and now she actively makes sure I get what I need. I appreciate it, because everyone pretends she doesn’t do it, and no attention is drawn to me in the process. She even avoids doing things like loading six bottles of Coke and four boxes of icecream in the one bag. I may be a dancer but I’m not a weightlifter, and I can only carry so much on one arm…), or that I don’t dance at that school any more (because instead of fixing their shit, they told me it was my fault I was being bullied for not talking and needing a corset, because I don’t work hard enough to be nice, and it’s not their responsibility to provide a safe class environment because people should stand up to bullies and that will fix it). He already knew about the migraines, because there’s no hiding from stuff they already know, although he only had one old assessment there, and not my previous ones. I managed to point to my back, but while I was deciding how or whether I should point to my tummy or between my legs, or if I even felt safe doing that in a room with a cisman with the door closed… he moved on.
When he wanted to know if I had a GP, I was able to say yes, because I finally do. Except she doesn’t know about any of this, because my psychiatrist is away and I gave up trying to explain because there are many things I do not actually know, or understand. (For example: how did a slipped disc disappear in 18 months? Can a corset really fix that? Because, if it did, I’m definitely converting to 24/7 and waist training, and everyone who tells me off for ruining my back can be told to go jump with an expressive glare and no further contact.) He wanted to know who she was, and wanted me to write it. I typed it out, though, and he was like “oh! you have it in your phone?”
Then he tried to take my phone from me. I pulled it back, and he pulled again. “I need to write it down!” he said.
When he finally let go, I wiped it with a tissue. “You don’t like germs?” he said. “That’s important, too.” He wrote that in the top corner of his cover sheet. No apology, of course, not even to have a pretence at making the rest of the appointment palatable.
Then he told me I wouldn’t be able to get my payments because my disability would prevent me from meeting the obligations required to receive them. He reached over my head, trapping me in the chair, because he wanted me to sign up for a mentor at a church program, not my church, a program I know is underfunded and filled with people who are not capable of helping me, because I used to handle their stuff for them when they couldn’t. When I typed to him that i cant deal with more people right now he started yelling. “It’s just for later! You have to make your GP refer you!” I was impassive. I ignored him. I left.
I am also not meant to deal with new people without my psychiatrist’s assistance and approval – the new GP was a special case, because I could not wait another month with the Mirena, and I had to fight so hard for that it exhausted me. (Stress can cause periods. No wonder it’s not stopping.) I went to her with a letter, and I gave her my psychiatrist’s name and number, and authorised her to talk to him for anything else. I couldn’t take a letter to this appointment, because I had no idea what I needed to convey, and I had already said the important things. I was very lucky with the GP, a combination of praying really hard, being absolutely desperate, and asking the Internet for help. (The internet tells me, also, that as genderfluid and asexual, I qualify as trans*. I don’t know what to think about that at all. I just want that stuff inside me gone so I know that when there is pain it is not to do with a thing I do not have. Try explaining that with yes and no. Apparently this is why American people don’t like putting A in GLBTQIA, because asexuals aren’t minorities who are oppressed, and everyone fits under another letter. Having been subject to rape explicitly because I said “I do not want it, I do not like it, my brain doesn’t react in a pleasurable way and it makes me feel uncomfortable” and being told I just hadn’t been trained right yet… I beg to differ. See how I ramble.) But I will be unpacking that as soon as my psychiatrist is back because, again, depressive dissociation thing. I’m even back to the bad way of eating, stuffing myself when I’m not hungry with things I react badly to, expressly so that I can throw up and say I’m sick so I can’t do things, hoping to get out of whatever comes next. I don’t even know what the name for that is. Since I had the period-throwing-up last weekend, I have only had vegan schnitzel sandwiches, packed full of nasty nasty gluten and that thing that isn’t chia and probably begins with f. In fact, I went from the appointment to the supermarket, spent money I don’t have on more schnitzels, and today I made myself throw up because there are bits in them that look like when you get a vein in steak, and the texture of those makes me throw up. Nobody believes me when I tell them I don’t weigh myself because I know it would become an issue, because the 25kg weight loss is meant to have stabilised (it hasn’t) and “if you just eat more you’ll be fine” which is now a trigger, and “but you don’t have any history of eating issues” despite repeatedly fighting referrals for anorexia because the weight loss is because it hurts to eat and being super careful about sticking to safe foods except, when, you know, not. I wonder if that was important for him to know, too. He didn’t ask. I couldn’t yes or no that, either.
I kept my sunglasses on in the appointment. This is a strategy, because their lights are fluorescent and blink a lot, and they hurt. It also is an indicator for me, because I dragged myself to my previous reproductive health person with them on, and she told me to take them off, and proceeded to tell me my migraines weren’t real, even though she’d previously happily recognised them as a sign that I needed to not be on tricyclic pills. He asked me if I kept them on at night and how I saw to drive. I pointed to the light. LED headlights are worse than fluoros. I have my car windows tinted to the max, maximum rated sunglasses, and it’s not enough. However, this is also not relevant, because while my psychiatric condition is related to migraines and headaches and brain fog, that is only one kind of migraine. The most troublesome kind is one I do not understand, the one on the right that feels like a stabbing pain, comes on without warning, and then just sits there like a hole above my eye. That’s the one that came with the words going, until that became permanent. Apparently, developing lesions in certain parts of my brain, ones that weren’t there after the concussion that sent my hormonal migraines from annoying to debilitating and come with stabbing from the back of my head, have nothing to do with that. Perhaps that’s why the neurologist won’t let me make an appointment to see him. My hormonal migraines, really bad at the moment because that’s how they work, are not psychiatric. Also, not relevant.
I was so exhausted when I finally got home and I wished I could cry. I wiped down my phone with antibacterial wipes, but it’s not enough. It’s still dirty, and if I touch it I remember him pulling it away from me, ignoring me. I want a new phone, one that is safe, but I can’t afford it, and nobody will help me buy one, because I asked (My last phone lasted three months, because someone stole it, then after finding it didn’t have personal data on it, left it at the post office and my dad picked it up. I noticed it was gone and went home, and Mum raced out behind the car while I was reversing and couldn’t understand why I was angry with her. She’d called my dance school and told them to tell me she had my phone. My teacher made fun of me. I nearly hit her with the car. My pictures were gone. The post office people laughed at me for losing my phone. It was dirty. The stranger who called my dad to tell him where it was left said it was his son’s phone, so my dad was angry at me because he still thinks I am a girl, even though they raised me genderblind. I really liked that phone. When I had to get a new SIM for this one, they gave me a combination SIM, and as I was sorting out my bag so I wouldn’t lose the tiny thing, the attendant came back over and popped all the parts out, so I wasn’t actually able to get it into my phone. He decided he was “helping” by explaining to the retard, which is what I heard when I was walking out. The manager said he was very sorry, but he remembered the incident because he was the person who did it. I can’t switch providers – the account isn’t in my name. If I switched providers, they would give me a new phone with the plan. I can’t pay for the plan because I do not have money for that on top of medication and ice pads). It will be like my bear, and like the shows, and no longer be of use.
This is why there is Plan B. It is the same as Plan A, but it can’t be put off, because nothing works any more. It is a clear, logical thought that is rare in my brain. It is a conditional.
If your claim is denied, and they put you on unemployment, you appeal. Appealing is a legal process. It is not new. It will require you to undo all the work you have done in becoming functional, and go back to that old person, the one who worked seventy hours a week and had to lie about it, who only slept on weekends and ate one meal a day, who kept all the nasty things from work immediately mentally accessible because she had to be faster and stronger and better and do three people’s work because one of them wouldn’t do her own and make work for two as a result. You have grounds, because they gave you the wrong kind of appointment, and asked irrelevant questions. You’re already thinking in contingencies, laying the groundwork, a paper trail, and preparing the forms. You’re already dissociated. They need you to appear sensible, reliable, non-threatening, so you will have to abandon everything you’ve done to reassert your individual identity, go back to looking like a girl, because people think certain ways when they see a girl, and you have to appear like a girl who is stronger than a man, because that’s what the environment requires. You will have to fight and not cry, and you know delegating to another lawyer will not help, because when they lie to you and act without your permission, you will have no recourse. The only way to get through this is to retain control. You can’t ask for help, because nobody can see you like this. You won’t be you.
You will win, but then you will have to make your point. You can’t break it all down and expect to build it back up again. That will be it. You already know how it ends.
I’m halfway down. I sent a carefully crafted complaint, packaged in a certain way, because it will prove that I tried to speak up, and it will function as proof, because there will be paperwork on the other side that I can ask for to correspond. I know this game. I lived it, and it nearly killed me the first time, the second time. Things come in threes; in comedy it’s because everyone expects it the fourth time.
My psychiatrist isn’t back for nine days. I was meant to know his schedule, everywhere he practises, his best contact. I refused to give anything I knew of his routine. The man wanted to clarify one thing; he wouldn’t ask me. He can use the contact my psychiatrist gave him. It will give me time to prepare, to make everything perfect. Next Thursday, at 12:01am, I will have to click a button to say I am following a legal obligation I do not have and cannot comply with, because there is no other option, and I will fall asleep covered iin blood. I have a show at the end of the month and the only person I have who I am not related to who actually cares about me beyond being paid to do so expects me there and I cannot let him down. He will buy a ticket for my show, and be the only one who comes. It may not be enough.