Visible illness v sucking it up

TW: people with no boundaries, unhelpful help, comparing conditions, ptsd, discussion of physical v mental pain

I was incredibly lucky to spend the last week participating in a small theatre movement piece. They cast me, fully aware that I don’t talk, that my back does weird things, and so on. I don’t care if it was a diversity point. For someone who used to perform all the time, to be cast in something again and then to get through it, twelve hour days, sucky corsets (no, those are definitely not steel bones – steel bones don’t invert and leave bruises like that…), pushy insistent interfering people and all. Seriously. The ‘do not talk to a person with headphones’ thing did not make it to these people. I screamed at one man, because I was working on my phone, and he shoved his phone in my face, while sitting on someone else’s things. Like, what? I don’t even.

 

But through all this, I have had a migraine. I don’t know, anymore, if it’s just one big long continuous migraine, or a bunch of short ones and I’m just too blah to distinguish phases. I ended up doing my part backwards, and I could swear I was doing the same thing as everyone else, but I was facing the wrong way. I was meant to be on stage, and I couldn’t make sense of the words. I knew what they were, but they had no meaning. Sound from my right side is just noise with no difference in tone. Touch hurts.

 

So of course, everyone’s been touching. Complete strangers came up, rubbed my arm, and demanded to know how I “walk in those heels, don’t your feet hurt?” I pull away, and they get offended, but the damage is done.

But I just deal with it, because that’s what I’ve always done. Somewhere in between promo and being polite-but-rude-so-the-go-away to people, I got to the tipping point, where there’s so much pain, and everything has to keep going, and I went into survival mode. I will pay for this later, of course – I stopped eating, I have had 12 hours sleep since Monday, and I haven’t had the ears not working thing in months. Survival mode is what I was in before – going back to it, even though it looks normal and positive, is a regression for me. It’s where my body goes ‘okay, you’re way past your limit, but you have to keep going, or you will get in trouble, so we’re just going to get all this adrenaline, and you’re going to need a ton of caffeine, and we’re going to get it done’. I had flashbacks; I stabbed myself in the eye with a mascara brush because of one. I had a panic attack waiting outside the theatre today (yesterday?) because it wasn’t a work day so I couldn’t know for sure she wouldn’t be there. It’s not the right place, mentally – that’s how it is. I can be physically functional and my brain is this dissociated hyperaware PTSD monkey, or my brain can work while my body doesn’t. If I establish a middle ground, through rest and careful management, it inevitably gets pushed back, because I’m not allowed to stay there. The issue is that at oldwork, my brain was conditioned to work through extreme pain under extreme stress for a sustained period of time, and now it only functions at that level under those conditions, and each time that happens, it undoes all the work of establishing a more… sedate? balanced? normal, because it goes straight back to shutting out everything that isn’t necessary, moving it around, and then as soon as the pressure is gone, all that floods back in, but there’s so much, it overloads and sends things to the wrong place. (The first time it happened I was eight, and that’s still the best explanation I have.) It’s the kind of damage you learn to cope with, not that gets fixed.

 

So I got to the theatre, and when I was finally let in, the gossip was “oh, someone rang in, they have a migraine and don’t want to come, but we told them to come in anyway, because we don’t have understudies”. This circulated through the entire cast, so by the time that person arrived, everyone was prepared to fuss over her. They helped her change, they offered her drinks, they kept asking if she was okay.

She was sitting next to me.

I can’t see out of my left eye, my right ear only hears noise as a dull roaring thing, touch hurts to the point that I wore a jacket so that the aircon didn’t give me overload, and my right side doesn’t move like it’s meant to.

“Your knitting is so pretty! It gets longer every day!”

“I like your dress, did you make it yourself?”

“Do you cosplay? You look like you cosplay.”

 

And then, while I was waiting sidestage and leaning on the wall so I didn’t have to stand on my own and fall over and crush the set for the production after us:

“What’s wrong with you?”

I pointed to my head and waved my hand – “pain head”.

“Oh! You have a headache! Have you drunk any water?”

I stared, then shook my head. My headaches need sugar – water just makes me pee, and peeing in a corset? Is hard. Especially when the corset is over a dress and a maxi skirt and it’s a shared toilet with a line. The reason that some tablets come with sugar as an ingredient (as, say, glucose), or with *ephrine, is that those things are basically immediate energy for the body – they help the active ingredient to work faster because the energy is there to be used to circulate it. I know what works for me, and I was in survival mode.

The other lady got offered Gatorade.

 

When everyone clapped, she blocked her ears, and people made sympathetic signs and went to check on her.

 

I blocked my ears every day, when I didn’t have my headphones in, and it took me snapping when they were complaining about this lady calling in and being like “I have a migraine, and I’m here.”

Despite a few rather obvious not-okay moments, like leaving the theatre on day 3 by dragging myself up the stairs with my good arm because the other side was not working at all, a couple of uncharacteristic balance issues, and the whole ‘look my mouth is moving but no words are coming out!’, apparently nobody had noticed.

The director checked on me after I snapped. “You good? You took medicine?” Yes. I managed to acquire enough medicine to get through, and I have taken it in full view of everyone, multiple times. But that was, you know, it. Because I just kept it to myself, kept to myself, and focused on my part – things I could control, that I could make easier for myself. I had my knitting so I didn’t fidget and end up bleeding on stage because I scratched a hole somewhere I couldn’t patch up. I had my headphones and my mp3 player, so I didn’t get ambient noise and I had sounds that didn’t hurt. I stretched as best I could, under the lustful eyes of certain creepy cast members, and felt everything go tight and then start to shift.

She made it big, and whether it was intentional or not, she made it known to pretty much everyone. “Are you okay?” got long answers about how the vibration caused something, how the cake (which of course I couldn’t eat) stayed down, how it was hard to change into costume, how moving caused vertigo.

 

Same thing, different reactions.

 

It struck me as interesting, that that happened, and how people reacted differently to her than they did to me. I don’t know that being open and honest about our pain will actually elicit the same kind of concern from everyone for everyone. I don’t think that having that level of concern directed at me, from so many people, would be a thing I could cope with. But if we lived in a world where every time someone said ‘I am in pain’ and people offered to help, without questioning/interrogating/testing them, and then respected the answers they got, well. That would be novel. At the same time, putting all that on display shouldn’t be necessary to be treated with consideration, and it’s not a thing that we always have the energy to do, and it should be our choice whether we do it or not. If you, like me, just want to get through the thing with minimal attention, and do your best to make your bit easier with things you can do, that should be treated the same as someone who goes out of their way to let everyone know their situation. It’s the same result either way – getting through the thing. It’s the same issue either way, too – getting through the thing while dealing with pain.

The lady next to me ended up in the same position – she had to get through it despite everything – but people treated her as if she was special just for turning up.  And I got through it without anyone’s help. Whether it’s because I didn’t ask, or because, you know, people who have pain are still able to be independent people and don’t have to get special treatment just for being in pain. Like, okay, I had the seat on the end so I didn’t have to be in a people sandwich, I was allowed to go in early to attend to costume matters in relative privacy, I was allowed to wear my fidget bracelet and corset on stage, I signed where people would let me, I had my music on all the time and kept my bear with me as much as I could. I took what I needed without making a fuss, and, apparently, nobody noticed.  For me, that’s still possible. But I have that choice.

 

 

Mind you, they all think I’m in bloody high school, so it’s skewed anyway. You have someone with pictures of their kids on their phone they’ve been showing around, has sun damaged skin and crow’s feet, and they say they have a migraine? Yeah.

Then you have someone who (apparently) looks like a teenager, keeps to themselves, is attractive (apparently – that is a rant for a more coherent day), wanders around with a teddy bear that doesn’t get hidden (we are shinobi but we do not hide, wasshoi!), and they say they have a migraine? Yeah.

But both those someones probably know what they need and don’t need, and shouldn’t get treated any differently based on how loud they are about it.

 

But, you know, I didn’t fall over, and I achieved something despite every single one of those people who thought ‘well, she’s just a little girl, I’ll give her advice and pat her hand and make things worse!’ and just made things harder. (I even put on my audition application that I am genderfluid, btw – some people just don’t get it.)

 

That something also means that, when I finally get more than an hour of sleep, I will wake up and being able to sleep will have told my brain that survival mode is over, I will sleep again, and then the psychiatrist will yell at me for being worse and try to pressure me into treatment that is inaccessible to me despite also saying that therapy needs to be patient-led and I have to be comfortable with everything before beginning it.

 

Maybe it won’t be over after all. Perhaps, if I complain loud enough about how the lights are too bright and the sounds hurt and sitting hurts, he will offer me his Gatorade too, and he’ll see me instead of the version of me in his head that he can white knight.

 

The other thing to come out of this is that if I end up being forced to go back to work, I know it has to be in the theatre – in a very controlled, people-filtered environment, of course, but the entire time, I wasn’t nervous.

I was home.

 

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