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My roommate told me that I should go for the village housing opportunity. We discussed it, in detail. They said they were happy I was able to find a village house that I could live in at all. But I mentioned meeting my future housemates and now they’re really upset and I just wish they would communicate with me. I don’t know what I can and can’t say and what will and won’t make them upset because I am not able to have that conversation with them. They will never admit to being upset. So as a result I will have to tiptoe around pretty much everything out of caution because I don’t know what will upset them. And I just can’t keep doing this. And I don’t know how to tell them this without making them upset. So yeah, I am excited to be living in a village house. And yeah, I’m okay that I’m not living with them, because this isn’t a sustainable living situation. I still want to be around them, but I can’t try to navigate their emotional responses when they won’t ever discuss their feelings with me.

[nope-body]

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It’s always in the little things. This time, it’s realizing that my parents weren’t the best at parenting. Or at least that it wasn’t normal.

My roommate was borrowing my masks without asking. Not a huge thing, but I’m not confrontational. So instead of asking, I just made sure that a never-opened pack was on top, and checked to see what the seal looked like. Sorta setting a trap, I guess? Definitely not the best decision in hindsight but it was almost second nature. Not that that’s an excuse, just another part of this whole thing. When they took a mask next, they didn’t even bother to close the pack. I’m so used to having to sneak around and make sure that nothing’s out of place so I don’t get blamed for anything that I forgot that other people don’t do that. Other people don’t pay attention that closely. I don’t want to pay attention that closely. I don’t want this history of being told my memory is wrong even after I write things down to make sure that I’m right. That doesn’t happen here, obviously, but I’m still too used to it happening. I just want to know how to socialize.

I’m going to be living in a house with 3 people I barely know next year. I’m terrified but also comforted because I won’t have to worry about personal space, no one is going to feel too comfortable, and I won’t have to struggle to tell anyone off. I’ll have to figure out how to live independently, but I’ll have to do that anyway at some point. I feel bad for disrupting my friend’s plan to room with me but also I don’t know if it’s actually good for me to be living with them. I am bad at enforcing my boundaries and I don’t handle anger well, and they’re so angry and frustrated so much. And I can’t just tell them to stop feeling emotions. But I also feel bad whenever I try to enforce a boundary because they never take it well and it just is so hard. I care about them, but I can’t keep living with them, and I don’t know how to say that without hurting them. But the excuse of living in a village house that’s mostly accessible to me and will allow me to cook again and will be actually Covid safe means that I won’t have to say anything about that.

I’m so tired of having to be The disability advocate. Even when I’m not the only one, I’m the one everyone looks to. And I don’t know any more than anyone else who’s done their research! I’m not more qualified for any special reason! Sometimes I just want to be able to exist in the world without having to advocate for myself. I want to stop worrying if my roommate has been hanging out with our sick friend. I want to know if our friend is still sick or not! I’m just tired of trying to carry everything. People want community, but they don’t want to contribute to it. I can’t keep going forever.

[nope-body]

SOLUTION TO BEING MUCH TO SCARED TO TALK TO MUTUALS:

FUgkin..... hit em with ur paws......

[nope-body]

i cannot possibly overstate the psychological damage of growing up being abused in a way that is considered so disgusting as to be literally unspeakable and treated as such.

#went to a survivors of sexual harm event at my school once and they were so big on naming their abusers #at the end they tacked on a ‘if you don’t want to you’re not obligated to but it’s really important to do so!’ which just made it feel like #there was a right way to do things and a wrong way #the other thing is that they were so heavily focused on sexual harm that happened in college that they never mentioned that other types of #sexual harm and abuse existed which also just made the whole thing feel like it was only for a really specific group of people

[nope-body]

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A fun thing bodies do when they’re in so much pain and they don’t know how to handle it or fix it is that they will just cause muscle spasms. This is most common for me with subluxations but it really could happen with any kind of nerve pain on the inside of the body (in my experience at least). The muscle spasms are uncontrollable but it’s not like a seizure- I’m fully aware and conscious and can move the non-spasming body parts.

Relatedly, my muscles are a large part of what holds my joints in place. The downside of my muscles being strong enough to hold my joints in place is that they’re also strong enough to pull my joints out of place. I can’t consciously do it, but when my body is causing muscle spasms with the hope of doing something, anything, then my muscles are more than capable of subluxing a joint. Or making a current subluxation worse.

That all sucks. Being in that amount of pain in the first place sucks. But the worst part of all of it is feeling your body pull itself apart and being helpless to stop it. And you’re just going to take even longer to recover now because you probably just got 5x more injured! And you can’t do anything and the only way to make it stop is to convince your brain that body part doesn’t exist. Dissociate so strongly from that body part that your brain stops trying to send any signals at all. I’ve done it before, but it just stops the spasms. That time it was my leg spasming out of control. I still couldn’t walk once I dissociated from it. I couldn’t fucking move it or think about it because that would increase communication between my leg and my brain. So the only good thing is that the spasms stop- I don’t regain any functionality and there’s no way to know when it’s safe to reconnect with my leg again.

This time, it was my upper back and shoulders. And it is so much harder to dissociate from your torso when you have to breathe. And so I might have subluxed my shoulder. Hooray.

[nope-body]

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The scary thing is that I don’t know what is happening. I know it’s nerve pain. I know where it is. I don’t know what caused it. I don’t know how to make it go away. And it is one of the most painful feelings I’ve had, ever. It’s caused two full-body muscle spasms which I’ve never experienced before (I’ve only experienced it localized to a limb) and multiple other localized muscle spasms, all caused by the intense amount of pain. It ebbs and fades and I don’t know why. None of the pain management techniques I know of are helping. I’m struggling to walk. I’m struggling to go from lying to sitting to standing. I’ve fallen while trying to lie down on the floor. Something is wrong and I’m so used to knowing what is wrong and right now I don’t know what is causing any of this. I’m having trouble with body temperature regulation too. I know I should probably go to the doctor but also I don’t want to be told that it’s psychosomatic or just to take an ibuprofen or something that isn’t actually helpful. I don’t want to be told nothing is wrong when something is definitely wrong.

[nope-body]

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One thing you can never prepare yourself for is the staring when using a mobility aid. And it’ll come when you most expect it and when you least expect it- that’s why it’s so hard to prepare for. You can prep for awkward doctor’s office encounters (especially when you’re seeing the doctor for something completely unrelated), weird looks in the hallway, glances on the sidewalk, the reactions of those closer to you. You can never prepare for the eyes that follow you from those places you can’t reach- the stares out the windows, the two people behind you who aren’t being as subtle as they think they are, the cars rounding corners and lingering to look at you, even when you stare back. I’m so tired of people thinking that I can’t see them behind glass, because I can. I know where your eyes are going, I see the path they’re tracing to my cane. I can see your faces, both turned in my direction (drivers for the love of gd look at the road). You would see me staring back if you bothered to look at my face. If you bothered to see me as a person.

I am not a curiosity, I am not a one-person freak show, I am not on display for your viewing pleasure. I am just trying to live my life. Leave me alone.

#I’m so fed up with this #the cars especially #it makes me want to go and hide inside for the rest of the day

[nope-body]

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My parents weren’t good parents. I don’t think they were good parents at all. I had to be someone I can’t be for them to care about me, and now that they’ve realized that I can’t be that person they just. Don’t really care anymore. Sure, they seem like they care some, but half of it seems like curiosity and the rest seems like them applying what they learned in therapy. And if we discuss any difficult topics at all I still have to walk on eggshells like I used to have to do all the time.

I’m still afraid of discussing my grades with them. I’m still scared that they’re going to yell at me. I still want them to care about me and I know that they don’t.

I know my sister needs more support right now, but that has left me with no support. I can’t navigate finding doctors and getting medication on my own yet. I tried and it’s not working. I don’t know who to go to. I don’t know who I can talk to about my problems. Everyone talks to their parents fairly often and I dread any contact with them. I wish I had parents who cared. Who understood. I wish I wasn’t so alone.

[nope-body]

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I think that my and my roommate’s friend might be stalking them? Like I know what he’s doing, I’m just concerned that it counts as stalking passed off to others as spending time with a friend. My roommate has a hard time saying no/establishing boundaries, and he knows this. He used to ask before coming into our room or like. Ask if we wanted to walk together or whatever. Because that’s what you do, you don’t just assume. Same with physical contact! Where a lot of consent training fails is that it never explicitly says that the responsibility is on the person initiating to ask for consent, every single time something is initiated, even years into a relationship or when changing where you’re touching someone when cuddling. It is never on the other person to just say no if they’re uncomfortable, you have to ask first. And that’s not happening anymore with him. He’s not asking. For anything. I use a forearm crutch or cane- I have to open my door wide enough that someone behind me could catch it and walk through because otherwise I can’t get through. But this means that he will just follow me into my room whenever he wants and I can’t stop him. And he lives across the hall!! He can hear every time our door opens or closes and has a peephole to see into the hallway! We don’t have a peephole! And he won’t listen when I do everything in my power to communicate that I don’t want to be around him- there was one time recently where I was overwhelmed and couldn’t really verbalize my thoughts and I was just going to go downstairs, grab food, and stay alone in my room because I didn’t want to be around people. I pre-lined like I always do and he was at the front of the regular line and I was going as close to running as I get when walking with a forearm crutch to just get back to my room, and he started following me and I couldn’t speak so I couldn’t say that I wanted space. I didn’t acknowledge him at all, and I kept trying to outpace him, but he’s super tall and could catch up easily, and then when I opened my door he just. Came right in. Didn’t ask, didn’t even make sure that I knew that he was there. And I couldn’t do anything! I just ignored him the entire time. And like. That was one time with me. This is daily with my roommate. Also if he knocks and you open the door, he will just walk right in. He won’t ask. I forced him to ask today because I didn’t open the door all the way so he couldn’t just come in, but that’s harder for me to do (just physically). And then I had to spell out that I was busy and that now is a bad time to get him to go away.

On a related note, it’s really not helping my paranoia. I don’t want to be worrying about whether or not someone else knows if I’m in my room or not. I’m also realizing that I had some low level paranoia last year because my roommate was so bad. (Different one, I’m friends with my roommate this year.) This is bringing that back but way worse.

[nope-body]

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Gotta love being denied the rights to Company because a totally different version of the musical is on national tour and coming to the nearest city immediately after your show would close! We’re appealing it, but it’s like a 50/50 shot at this point. Bonus on top of all that, I can’t sleep! As in, it’s 6:37 am and I have been up since like 11:30 am yesterday, and in that time have (mostly) figured out registration for my private reading course (it only took three months), cleared up a misunderstanding from my end and started spitballing ideas for an action plan for company with our intimacy choreographer, cried about having to fill the role of making theater more accessible because sometimes I just want to be able to do theater and not be the trailblazer, drafted an outline for a submission for a USITT award, went to the invited dress rehearsal where I am tech-week ASM, immediately caught the shuttle to my friend’s dorm (who’s directing company, I’m sm) for us to Figure Things Out (appeal or no, and what’s our backup title) because we had a deadline of midnight because that’s when virtual auditions opened, helped write an email to the faculty member helping us get rights who advised us to go with our backup title instead of appealing and we had to say “we fully understand what you’re recommending and why. However, we are stubborn and think we can win the appeal and also company is our baby at this point. Here’s all the reasons why we think we can win the appeal. Here’s our backup title and plan if the appeal is denied. We promise we thought this through and know the risks we’re taking,” then I got to pet two different cats, then I had to borrow my friend’s car to drive back to my dorm because the shuttle had stopped running (it was that late) and then I tried to sleep but couldn’t, so I journaled about everything I did relating to company today (for that private reading) and somehow that took 3 hours (it’s 5:30 am at this point) and tried to sleep again, couldn’t, sent out info to our newly recruited props person, ate a bit of food because I’m starving, and now I’m going to brush my teeth because I need to and what else am I going to do?

I did just figure out why I didn’t sleep at all. I might have maybe accidentally taken my adhd meds instead of my pain meds because it was dark and both are little capsules. So I’ll take my pain meds, nap in the morning, then take my adhd meds and go do all the work I need to do I guess? Who knows. At least I didn’t take that weird sleeping pill I was given at one point because I tried to counteract my adhd meds with it once and I ended up wide awake with a racing mind and unable to move a muscle because my body was so fatigued. It was a horrible night. This has been better, at least.

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Other separate issue is that I can’t really set boundaries with my roommate? Like I don’t need to often, we’re friends and we understand each other pretty well, but when I do my options are either set the boundary and then feel like shit because they immediately over-apologize and shut down and feel bad to the point where I feel like I should comfort them but 1 they won’t actually say they feel bad and won’t accept comfort or anything and 2 I don’t want to have to comfort them because I set a boundary, especially because that gets dangerously close to walking back that boundary, or my other option is to just deal. Like, I set two small boundaries and they’re on the verge of crying and I feel horrible but also those were like. For my health. I asked that the window not be left as far open and it was, especially when they leave the room, because it gets cold and cold hurts my joints, and also the first thing to get cold is my bed, so it takes longer to warm up because there’s less warmth and I don’t generate much body heat. Also walking into a very cold room makes me really stressed and I don’t want to feel that way when I get back from a tiring day and just want to sleep. The other boundary was asking them to use one pair of shoes over the other when borrowing my shoes (which is something we’ve established they can do) because one pair of shoes has sole inserts for arch support that really help me, and I don’t want the inserts to get molded to someone else’s feet. Also just their feet are sweaty so the shoes tend to get wet and that’s more of an issue with the shoes that I wear almost daily that have the sole inserts.

And I didn’t go into all this detail, it was just a quick “going forward, could you do x, because y.” And that made them so incredibly upset and I feel like shit but I need my inserts to work for my feet and I need to not have a freezing cold room.

And it’s partially because of this reaction and how shitty I end up feeling that I don’t set other boundaries! Like, I want to ask them to make sure they put my shoes back after they borrow them and put them back neatly, because the mess under my bed is a thing that bothers me a lot and I don’t want to trip over my shoes in the middle of the room, but I can live with it, so I don’t set the boundary, because it’s harder to set the boundary than just deal with the minor annoyance. Another one that I need to set is not raising their voice at me when they’re upset, not slamming things down when they’re angry or upset/frustrated. I have trauma and both of those are triggers, and the things that make them angry are usually things that I don’t even know about until they are angry about them- ex. a cook shift that was stressful/went poorly, an article on the internet that upset them. And they’re not yelling at me about something I did, but often when they’re angry about something they use the general “you” and are talking to me, so while logically I know that they don’t actually mean me, they mean a theoretical you, my brain struggles to make that distinction when in fight or flight because they’re angry. I haven’t brought these up because if this is how they react to me asking them to not keep the window as open, I can’t even imagine what it would be like to tell them that something is a trigger and ask them to stop. I just. I want to have healthy communication and boundaries, but I’m already struggling to set boundaries because I couldn’t really with my roommate last year and I can’t do it at my house. I was hoping that rooming with someone who I knew and trusted would be better, and it is, but I’m still terrified to set boundaries and feel horrible whenever I do.

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So I’m starting to realize that I could get a job as an accessibility coordinator in theater but I’m not sure how much I actually like the idea of that? I want to do shows. I want to work on shows. But I also know that everything I’m doing, all the things that I can put on my resume, would be the most appealing to a theater looking for an accessibility coordinator. But I’m only doing half of these things because they need to get done and I’m the only person who knows enough to do them. I want to exist in a theater space where I don’t have to fight to be recognized for my skills when they are equal to or better than others’. But in order for that to be possible I have to first make the space accessible and recognize that disabled people are people and can still do things. Sure, we have limitations, but everyone does, especially in theater. No one is good at everything. I’m only just starting to get people to change, and half of it is people who are new and already thinking about the same things. And I have been made abundantly aware that the rest of the change has to come from me. From the student theater org to my academic advisor who’s teaching me in a private reading next semester about accessibility in theater, I am the person who has to stand up and teach people. And I don’t know what the fuck I’m doing! I don’t know everything about all disabled people everywhere, and there’s barely any disabled people in theater to begin with for me to talk to about how they would want theater to be more accessible. Any op-ed pieces I find are just saying that theater needs to be more accessible, but no one is giving any ideas about how other than just following the ADA and anti discrimination laws. Like, I haven’t even seen someone suggest education. And the one time someone asked for education here for a show, they actually just wanted to feel good about themselves, disrespected me the entire time, and got upset when I told them that the option that would cause the least harm was something that they were uncomfortable doing. Not even the actor! The director just didn’t want to do it. And comfort takes precedence over actually listening to the person who you asked to teach you apparently. So we’ve got a great track record.

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It’s interesting how open I feel I can be with S about my disability and how it impacts me. I think a big part of it is definitely the 13 fiasco. I explained a lot of my experiences to S so they could both understand how to choreograph the stuff accurately and also just because we ended up talking about a lot of the issues that physically disabled techies face. I shouldn’t have had to disclose as much as I did but that was the position we were put in and I don’t blame them. Honestly I’m glad I got to do that with them because I understand a lot more about how they function now. And also there’s nothing like shared trauma to bring people together.

Other great person is their partner C who I just learned today is their partner, but it makes a ton of sense. Also the hickeys add up. But they’re also just similar people in some ways and different people in others and they seem to balance each other out really well. They also seem to be able to find quiet moments for each other in the middle of a hectic rehearsal while not distracting each other from their work, which is honestly a great balance to strike. I am determined to beat them to our next production meeting, even if it means showing up half an hour early.

But also C seems to have some sort of chronic (back?) pain which explains a bit of why S is so great with my disability shit. It also makes me fairly confident that S is respecting any and all of C’s needs in regards to their chronic pain which is good. Like, they care for each other, and they also care about each other. And they’re both caring, understanding people who I’m comfortable being physically disabled around.

I’m super glad that both of them are designers for the show I’m SMing.

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I don’t know why I’m suddenly so lonely and feel like a failure. Probably something to do with it being 1:35 am. Maybe also because I feel like I’m holding myself to higher standards with COMPANY and I’m afraid of failing there. I really want to prove that you can put on a good show without the theater department or the student theater organization and I want to be able to show the results of centering clear communication on a production team. I want to be able to do this show and research accessibility in theater and apply my learning to what we’re doing. I also have a ton of other commitments that I can’t make any less of a priority. For example, the disability student org that I am basically in charge of. I can’t just put a whole organization on pause, and I don’t want to. The struggle is that no matter how much I try, I don’t have someone I can rely on to lead a meeting if I can’t make it. I have no one else I can rely on to keep track of the tasks that need to get done and even if I ask someone to do something that doesn’t mean it will get done! Even if it’s my friend. I end up having to do everything myself, or close to that. I did half our treasury stuff last semester and I’m not the treasurer! I have no training! But it needed to get done, and we had a deadline. I’m also worried about doing inventory for the burlesque club I’m part of, because I thought I would be able to get that done over winter term and I haven’t had time so far. I want to prove that I can do this work, but I have to be able to do the work. And I can, the issue is do I have time.

And I’m trying to do all of this with chronic fatigue. I have to rest more often and for longer than other people. That takes up time! Time that I can’t really do anything with. And I know that being disabled in theater means you have to have a more impressive resume than most able bodied people with your same skill set to even be considered for a job, but I also can’t overwork myself to get that impressive resume. And I got a job again, but I’m worried that a lot of the hours I’d be able to sign up for would conflict with the show I’m working on. But also I need some sort of income, and this is the only job in theater here I can get. And I’m trying to find summer opportunities but they’re next to impossible to find, especially because I can’t do standard summer stock work and because for some reason a bunch of theaters aren’t running their summer internships this summer. I’m overworked and I feel underworked and I’m doing too much and too little and I don’t fucking know how to navigate this. I have no guide in this area of disabled and in theater. I can only trailblaze so much before I need to see a path to create. But also why do I have to be the one to do all of this? Why is it up to me? Why is there literally no one to support me in the place I need support most? My own academic advisor wants to learn from me, but I’m the one asking him for help! Also, I have only been visibly disabled, moving through the world as a disabled person, for like a year and a half. How did I end up in this position where I am viewed by so many people as someone who is super knowledgeable about “the disabled experience”? Our intimacy choreographer, who studied accessibility in theater over the summer for a professor’s project, thinks I know more about accessibility in theater than they do. I don’t know why! I have done basic dramaturgical research for the musical 13 when I consulted for it, and then acted as an intimacy choreographer for them during tech week for like two days in an effort to create less harmful representation on stage, and then I quit for the second time because they were so horrible and hostile to me. I have been a disabled person in theater spaces. And now I’m doing this private reading about accessibility in theater this coming semester. That’s it. I don’t actually know very much at all! I don’t know if there is even that much to know, because disabled people in theater are so hard to find! Most of the articles I’ve found (there’s like 5) just talk about disabled people being underrepresented in theater and that theater spaces need to become more accessible so disabled people can be in theater more. It’s so hard to find any discussion that even includes all aspects of theater in that statement, and I haven’t found anything that takes the discussion beyond that simple statement of “theater needs to be more inclusive of disabled people”. Because what do we mean when we say that? Who do we recognize as disabled, who do we recognize as being skilled enough to be in theater, how does that get unevenly applied to disabled people? What efforts can we make to be more accessible for physically disabled people even when our spaces aren’t accessible? What changes are we actually willing to make to the way we do theater to make it more accessible to disabled people with fatigue, with mobility issues, with chronic pain, with visible disabilities, with disabilities and chronic illnesses that have inconsistent and unpredictable symptoms? Are we actually willing to make any changes at all, or just pay lip service to inclusion?

[nope-body]

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Talked with a friend about EMDR and. gd it would be nice to actually be able to heal. I want to sleep at night without worrying constantly. I don’t want to wonder if tonight is a night where I’ll have flashbacks and how immersive they’ll be. I don’t want to be constantly worried about anything regarding my parents. I don’t want them hovering in my brain every single day, I don’t want to hear their words constantly. I want to be able to do things just because I want to, not to distract myself. I want to be okay. I don’t want to feel broken forever.

[nope-body]

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It’s so dumb, but I’m terrified of being in my bed. Nothing ever happened to me in my bed, whether the one here, at my house, or anywhere else! So I have no reason to be so scared. Unfortunately, my brain won’t listen.

I just want a hug. I’m so sleepy.

[nope-body]

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Why do I feel so broken? Like. I feel broken and useless and just. I don’t know. I’m not doing okay. I’m too scared to talk about it with anyone. I don’t know how to ask for help or even what to ask for. I feel like I’d have to explain what happened to me in order for someone to understand what to say, how to help. And I’m fucking terrified to do that.

I want to explain to E why I’m able to organize and prioritize and manage so much the way I do. They feel so bad for not having the same skill set but this is something that I’ve developed over my entire life and some of what taught me some of these skills are not pleasant things to discuss. But that would mean having to at the very least allude to everything that happened to me and I don’t feel like trying to dance around it, either. So I just don’t explain.

I’m dissociated. I can’t bring myself to care. But this is the kind of dissociation that comes before flashbacks, the bad ones, so I might head out to the lounge so at least I’m not in a dark room. I don’t know. I know the flashbacks are already starting because it feels like I don’t have a choice, like leaving this room isn’t even an option I could consider, which is making this harder than it should be.

I’m broken. I work hard to make up for it but I know that at the end of the day I’m still broken. I feel like I’m just lying to everyone all the time. I also did just fully lie to E and say that I’m fine, so some of its feeling, some of it’s truth.

I just want to be told it’s okay. That it happened, but it’s okay. Whoever it is saying it still cares, regardless. I don’t want someone to try and convince me I’m not broken, or I’m not tainted, or anything like that. I don’t want to be told that it doesn’t change who I am or any of that other bullshit. It does. It did. I would not have turned out this way if what they did didn’t change me. I want it to be okay that I’m broken, instead of trying to be fixed.

And that’s not me saying that I never want to heal or feel better or anything. I just don’t have the time or energy or resources to try to heal right now. I’m going to have to exist like this for a while. And I don’t want to feel like I have to try to heal, try to not be broken, in the meantime. Because I am broken, I can’t start trying to fix it yet, and I just want that to be okay. And if I never look for help, I want that to be okay too.

I just. I want to be cared for as I am, regardless of whether or not I’m trying to heal from that shit.