You Not Me

Kanzashi is the name for hair decorations used for traditional Japanese hairstyles, currently experiencing a bit of a revival. Funnily enough, the most common use for a kanzashi by non-geishas and outside of traditional Japanese dress… is to secure a Chinese bun. I cannot find another name for a Chinese bun (the hair kind, not the food kinds).



Today I went to check on a jewellery order, because when I received the piece two weeks ago, it didn’t fit. Apparently this hasn’t been a problem before, so they’re replacing it and I haven’t heard a whisper about how much that will cost. Initially, I was told it would be 1-2 days to hear back from the manufacturer… and it’s been two weeks. Apparently, they sent off a new design without checking with me.

Last week I went in, because the piece fell out after a day. I wanted it put back in, and they refused. I was rather upset, so I walked out. Today they apologised, because they realised after I left that I was there specifically to have it put back in.

“But you have it back in now, so it worked out!” Um, no. I didn’t need to spend two hours fiddling with 1.5mm long screws. Apparently I do need to talk, even though you said I don’t have to.


And of course, ‘your hair is so nice! You always look so cute! But today with the swords! It’s so perfect! You look amazing!’.

I get this every time I go in, every time. I work hard to appear able to dress myself, because if I’m not wearing makeup I get ‘you’re so pale! are you sick!? let me help you!’ and that is more annoying by a smidge. Maybe a whole smidgen. But honestly, I don’t need to know either way. Certainly, comments on my appearance are not part of a routine business transaction. And yet, people feel entitled to comment. Strangers even grab me on the street just so they can intrude into my life to tell me what they think of how I look.

When you put it like that, it’s not really a “compliment”, is it?


Last week I was getting my mail and a lady stood between me and the door. She remembered me from the church I used to go to, one of the ones where I had to stop going because men were following me home even after I told them to leave me alone. (I’m serious. Three times in a row. And then I went somewhere else and people interrupted the service to comment on my hair and my dress and… you get the picture. Except that one of them was the deacon.) I tried to leave. I signed that I couldn’t talk. I yanked out my phone and typed to her that I couldn’t talk and I had to go. She just gave me her email address and said she would pray for me, and how do I deal with that, isn’t so hard? (She’s the one who introduced herself as ‘my name is … and I have a chronic illness.’)


I was out until 11:30pm last night because I had an audition. I was left in the foyer for two hours, with no heating, and then the choreographer yanked on my bad shoulder because my hand was cold, and then grabbed my waist from behind. Pretty much everyone who encouraged me to try (even though the rehearsal schedule would be brutal and the whole show would take over my entire life for six months since I would have had to put in roughly eight thousand million times more effort than a neurotypical person to do everything and remember it, because ‘drama is good for PTSD, I read a study’) is shocked that a complete stranger thought that was okay to do to me, or even to, you know, anyone. Dance workshops come with a waiver, now, here, if they’re going to do that, and if you don’t sign, they can’t touch you unless you’re, you know, in need of actual emergency medical attention. I quit my class because (in part) the teacher went on training and came back and bitched about how they told everyone not to touch without asking first. (Everyone also laughed at me if they tried to talk to me and I couldn’t reply, and then they resorted to ignoring me completely, and if they accidentally talked to me and I signed back, they apologised. I complained, and they said it wasn’t their problem. So, I quit.)


I went black, when she did that. I must have made words, in the black, because she stepped away, and I felt her shock and offense like a wave in the air.The audition was over rather quickly. It was sabotaged, anyway. I didn’t make it out of the building before I started crying. Naturally, I had to get through the old lady cabal at the door; they needed the details and felt they had to pet me while getting them.


When I got home I stripped in the garage and put my clothes through the washing machine – twice. I had to wash my corset, too, which is a thing that is not actually meant to be done. I ended up freaking out because the soap wouldn’t come out of the stitching and I ended up drenching it under the shower. Everywhere someone touched me I had to replace the phantom touch, that I could still feel, with pain, so I couldn’t feel it any more.


People suck.


So I’m trying to explain this to someone and they’re like “I don’t have it like that, mine mustn’t be real”.

Well, it’s real. If it is a thing that you notice even if it doesn’t impair you, it’s real. It’s no less, no more than mine. It’s different, because you don’t have my brain disorder, my unique set of triggers, my unique confluence of trauma, my occasionally invisible lesions, but it’s not less, because you can still work, or you can handle strangers not minding their own business, or you can avoid your triggers. It’s not more, because you can’t leave the house. It’s just different. It’s you. And that, dear reader, is okay. We don’t need to compare in order to compete. Yes, you experience a thing, and I understand, because I also have a thing, and I know how that can feel. That is all.


I managed to fall over on lino today. The wet floor sign was at the exit but not the entrance, my ankle twisted, and I executed a perfect disco fall. I even managed to get up by myself. I had to pretend that a lady didn’t run up and start screaming ‘are you okay oh my god’ in my ear and that the cleaner wasn’t glaring at me for getting blood on her floor (maybe she should have put one sign at each end instead of both at the one door, huh, I could probably sue, but I know what that’s like), and I got to my appointment, and I sat down in my spot, even though someone was next to it, because that’s my spot and I have a routine and I need my cor-damned spot, and I found the bandaids in my bag and I carefully covered up the gash so that I didn’t get more stocking fibre in it and I didn’t bleed over anyone else’s floor.


“Do you have a first aid kit, or something?”

Um, no. I’m a dancer. Or I was. I am. I am a quantum dancer, dancing and not dancing at the same time as time loops over itself and this thing both never happened and always happens, twisting in my brain and never stopping, always being new. And also I am really tired, I have a migraine, I have a cold, and I couldn’t cancel my appointment because not only would I still have had to pay for it, I would have been harassed on Facebook for not turning up. Again. (Apparently, Facebook is a valid way of conducting debt collection now. Who knew?)


And in all this I learned, today, that if I have a kanzashi in a Chinese bun, if I fall over (because I will, because the thing that kills me most about this whole thing is how I get uncoordinated on a moderate pain day), my hair will stay.

I guess that’s one thing I don’t have to worry about. (Remind me to tell you about the doctor’s appointment I had where the doctor pulled my hair and broke my corset.)