it never ends

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.

So let’s skip over the part where I have actual bruises, the pretty dark kind with scabs in the middle, from where my boots cut into my legs because I swell up massively on planes, or how as soon as I was exposed to the water down there my skin went full on turny farm, or how apparently it’s impossible to buy such basic things as nutritional yeast, ACV, and amino sauce there, so I was stuck with tofu and microwave nuggets. (My mum apparently didn’t know one has to drain tofu even though I have shown her twice.) I got to cook, but not what I planned, so it was a bit draining, especially as I was unable to sleep there due to my presence on the mattress causing it to fall off the frame. Also, I had to read at the funeral, on less than 24 hours notice, because my parents were so impressed with my contribution to the eulogy that they made me read it out. “Oh, people won’t notice if you have trouble!” they said, and then “you did so well and we know it was really hard!” …


I got back the day after, got meds enough that I don’t have to go out for the week, slept for ten hours, slept for four hours, kept falling asleep while catching up on my shows, and still my ankles are twice the size they normally are. I woke up the first time to excruciating pain. My cousin in law has been messaging everyone to make sure they’re okay and apparently I got included in that, so I had to deal with her and try to be polite and not cause trouble for my mum while refusing to lie. It’s exhausting.


The reason I came back so soon was because I had a ticket to a movie night, and my mum gets really upset if I cancel things because of her. (Seriously. She has panic attacks about this and has threatened to sell the house if I don’t “do what I would do normally if they weren’t here”.) I was in the same cinema in the same seat where I was last week when my grandmother died and my mum wouldn’t tell me because she didn’t want to ruin the movie. (See?)


So since the whole computer-exploding thing I have been getting my tickets on my phone and scanning them in. Every time, the attendant tries to take my phone from me, even when I’m holding it to the scanner. That night was was extra-special, because there were three men blocking the way to the register and two of them were laughing about how I didn’t say ‘excuse me’. (Meanwhile, my throat is so swollen that my mum could actually tell, and I’m stuck not being able to swallow anything hard. Woo.) By the time I got to the seat, I was fighting back tears (again).

See, I picked up my phone off the charger (amazing how much battery you use when you use it to talk) and there were a bunch of texts. One of them was from a strange number.

‘This is to inform you of your referral to Dr (name). Please call to make an appointment.’

You see, in order to be able to attend, I had to cancel the dentist. I went a few weeks ago, putting the ‘hey this tooth has gone from a tiny bit black in the middle to black all through and impacted in like a day’ as my one thing to get sorted at a time. I made an appointment for a new patient checkup, since the last time I went I was sixteen and the dentist bullied my mum into having a tooth taken out, promising it would fix everything that wasn’t wrong, and instead getting me into the position now where half my teeth are positioned sideways and therefore are more prone to getting food caught in them that is hard to remove. Add in the period of severe vomiting and weight loss and the days my hands don’t work to hold the toothbrush properly, it’s a thing.

Instead of the checkup, the dentist only looked at this one tooth, and decided he would just drill away the black part. He got confused when there was no tooth left, but decided he wasn’t able to take it out because the x-ray showed it was too close to the nerve. He wanted, then, to do an x-ray, but it was too late and my piercings can’t be taken out, so he put in a temporary filling and I was to go back in a week for the actual checkup. He didn’t have any appointments available for three weeks, and I cancelled the one I had by walking in, makeup streaming down my face, typing that I needed to cancel and that I wasn’t able to reschedule, and walking out. The checkup and the x-ray, I was told, were necessary for a referral to a surgeon to have the tooth out, a fact that I ‘would have to come to terms with’ even though I, you know, knowing my teeth and my family history, already knew it would have to come out and was surprised he bothered trying to fix it. I’ve been walking around with a collapsed filling for three weeks (it really only lasted a day). One of the things I couldn’t get through to the dentist, partly because he wouldn’t talk directly to me and instead talked to his assistant who then talked to him for me, was that I honestly couldn’t tell him if pain from my teeth was waking me up because I’m in so much pain that I can’t tell which one is waking me up, or if the pain is even waking me up because my sleep cycle never gets to settle since people keep insisting on making appointments in the middle of the night. The pain from having a collapsed filling is like a vague blip that I only notice if I try to close my mouth, and since my face spends most of the time in some kind of expressionless paralysis, that’s not very often.

My plan was to get home, wait for the flight swelling and the tiredness to stop, and make another appointment (probably with another doctor, because I felt like I was being, well, less than empathetically treated, and I understood what the dentist and his assistant were saying over my head and I didn’t like that the assistant was pointing out that a filling wouldn’t work and he overrode her on the grounds of ‘but I’m good at this’ and then presented the filling to me as a given instead of an option. I’m picky. Whatever. I didn’t feel entirely comfortable and I got the impression that my piercings were a bit fetishised, and the way I was questioned about my medical history felt off.). The x-ray was necessary for a referral, and obviously it wasn’t important enough for me to make the emergency list, since that one week turned into three. I can deal with the pain, since it’s not more of an imposition than it was before. I have to save anyway, since the surgeon apparently won’t take insurance (I felt like this was positioned as a negative consequence to something I’d done wrong when I was told this – it was ‘it’s so bad you’ll have to see a surgeon and that’s not covered!’ Perhaps you had to be there to understand how it came across…), so any delay is appreciated so I can put money away to pay for whatever isn’t covered by Medicare.

So I doubt you can imagine my surprise, shock, and panic when I unlocked my phone to get my ticket to find a text there to say I’d been referred – without the x-ray, without the dentist even seeing me again, and, since I hadn’t made a new appointment, no assurance that I was even going back. And then, I was angry. I don’t like people contacting me by phone, since I have to use it as an accessibility device (my dad offered me a tablet and couldn’t understand why it was useless – it doesn’t have a keyboard. But it has a touchscreen! And how do you find letters on a touchscreen you can’t see?), and so I can’t choose when to deal with things, or they interrupt. It’s one of the things I make clear, and when I request letters for appointments, it also helps because I can go in with the letter and it has all the information on it to tell the receptionist why I’m there, and I get to keep it as a record of who I saw and when. As a patient, I have the right to be involved in my own care, and that includes the right to have a say in and choose what treatment I receive, and it includes the right to choose my own medical team, and that includes the surgeon. As someone with a disability who needs accommodations, I need to be able to select a surgeon who can work with me on that, and past experience has shown I cannot rely on doctors to advocate for those accommodations for me when they make referrals. As a patient, regardless of any special needs, I have the right to be involved in my care and to choose my own doctors, and to have my privacy respected.

All of this means that I shouldn’t be referred to anyone without my knowledge or consent beforehand. Seriously. I mean, I felt like I was being manipulated, because the dentist was pretty aggressive with me, but when I was in there I was mostly able to match that until he stopped talking to me. This, even if they’re relying on some ‘we may share your information with other doctors if it will benefit you’ on the form I had to sign to get in – the one which was recopied because I can’t write for shit and instead of having someone sit with me to do it like they do for everyone else, I was left with the form (very badly photocopied to the point where I couldn’t read it) and a pen, and I tried, but the assistant copied it out without speaking to me so I have no idea what their records now say – they’ve gone beyond that in sharing it with a doctor not involved with my care, and deciding for me both that the referral is necessary and who it should be to.


It’s probably a coincidence that they chose the one surgeon whom I can’t work with due to a conflict of interest. Probably. But as soon as I saw his name on the text I started having a panic attack. I blacked out during the movie. I asked my mum if she would be angry too and she didn’t understand the question and started on about “doctors just do these things”. I haven’t started crying because my brain is still stuck in the ‘you can’t cry because it will upset your mother and you can’t risk that because she might kick you out and then you’ll have nowhere to live’ mode.


My decision is to write a letter of complaint to the dental practice and try not to include the line “I’m very sorry my grandmother’s death inconvenienced you” because sarcasm doesn’t land well when it gets to judicial review, and to write to the surgeon’s office to say the referral was without my permission and request my records be destroyed. Perhaps if it was literally anyone else, I could be more subtle about making my displeasure known. Perhaps if I didn’t have a collapsed filling I could focus on something else for a bit, although I tried reaching out to a support service and instead of, you know, doing their job and offering counselling like it says on their website and their door, they want to arrange a GP appointment for me and told me they can’t be accessible ‘for privacy reasons’, along with a helping of ‘we normally do this by phone but we decided that’s not going to work for you so here’s how it’s going to work instead’, so I’m not up to that either.


But who the hell refers someone off to a surgeon without telling them? Especially after telling them that it couldn’t be done without this particular kind of x-ray and that they couldn’t afford the surgeon anyway? And how did they pick the one surgeon I can’t work with? And I am definitely not even going to try, because there is a whole other post of reasons why that would be a horrendously bad idea, some of which I’m not meant to talk about because it involves my old work.


The other reason I came back so early was because I couldn’t be around my mum any longer. If I had this on top of that, I would not be able to self-care and try to un-disassociate and sort all things, and then I would get yelled at (again) for not being sensitive enough or whatever. Because I did come back, I get the chance to stand up for myself. The one thing I have held on to all this time is that I get to choose my doctors. I have that right. If one isn’t working for me, I can find someone else. I get to do that. And I would rather stay in pain than put up with being pushed around, because pain I can manage, at least for now. The fallout from feeling like a slave/object/unperson? I do not need. And so.

But seriously, how do you get from “oh, cancelled the appointment and didn’t make a new one” to “let’s do a referral without actually doing a checkup or taking the necessary xrays or consulting anyone!”. If I felt like the dentist was aggressive and trying to bully me before, but put it aside so I could get this sorted, and well, sometimes I don’t get these things anyway? Now I know something’s wrong, and I can choose to find someone who will work with me and not push me around. Sure. It has to come out. It’s not easy, because it’s on that unusual angle and now there’s no tooth there to even grab without cutting into the gum. But I get to choose who does it. I get to fight for a local anaesthetic and day surgery. I get to not be sent to a doctor who has a robo-office that demands I ring them when that is a thing I can’t do. I get to choose a dentist who doesn’t pull this shit and sees me as a person who is capable of making my own decisions and lets me do so.


And I get to do all that when I’m not dealing with family drama on the side. Right now, my priority is making it through my parents coming up to visit with my brother (whom I’ve had to lie about for the last week while my mum justifies not telling anyone he transitioned and moved away – I’m very good at this by now: ‘oh what a pity all the grandkids weren’t there’ ‘well everyone was there in spirit!’ not a lie, just… avoiding. which is still lying. argh.).


I’m still not over not being allowed to play at the funeral. I probably won’t ever be.


Oh, and did I mention that now the bank have decided out of nowhere to start sending me SMS notes too? I put my phone down on Saturday and couldn’t pick it up again without bawling. It’s not like I consented to it, even. It’s really intrusive, and worse for me specifically (I know this), but that it’s one of my triggers doesn’t mean it’s okay for everyone else.