#i have crohn's disease and an ostomy anyway so fuck you

[smoothpeanut]

yeah im practically an anarchist. yeah i duck under the turnstiles at the pay bathrooms at the mall.

[ssemicharmedlivingg]

Stunning.

CW/ TW: Crohn’s Diaease, depression, colostomy

Something about that word always stuck with me. I remember it being used to describe women/their outfits/etc. a lot during my childhood. And for as long as I can remember that's what I've wanted to be: stunning. Throughout my life I've had dreams of being an actress, a teacher, a court stenographer, a nail tech, a rock critic… you get it. Nothing ever stuck, and here I am: a 32 year old college dropout who still doesn't know what she wants to be when she grows up.

Stunning, though, that never went away. To this day, I want to be so gorgeous that I literally turn heads when I walk past a group of people. I want to be noticed. I want to know what it's like to be a pretty girl. The type of girl who knows how to dress and move through a room, who knows what she wants and she gets it. And who would ever deny her anything anyway?

I’m not saying that I’m bad looking. I just. I don’t catch people’s eye. I’m just there. Do you know what an accomplishment it is to be invisible with bright red hair? I know. I know. Fucking shallow. One of my biggest wishes in the world is to be pretty. Well, not just pretty. Stunning. Not like that makes it any different. I'm still a shallow, insecure fuck.

But that ship has sailed so.

This guy that I’d exchanged pictures with before getting really sick/being in the hospital sent me some thirsty messages earlier. At first I had that old feeling, that kind of swooping in my belly and flush in my cheeks, and for a second it felt good. I forgot about how I look now. I forgot that I'm 40 lbs underweight with rapidly thinning hair and a colostomy bag. God I hate this fucking bag. I hated my body before all this, but I was getting a bit better as I got older. I was less bothered when I was a bit bloated or when my hair wouldn’t cooperate, and more hated stuff like Crohn’s Disease and the multitude of issues in my brain. There were still some physical hating days, but there were less than they were in my teens/20’s.

So anyway, after unsuccessfully trying to deflect, I basically said that my body isn’t the same anymore. He thought I meant I’m getting older and tried to be sweet about that, but I just didn't know what to say. For one thing, last I took any kind of pictures was around Halloween, so it's not like I've done a ton of aging in this short period of time, hon. But no, my body has *changed*.

So yeah, now there's this. Now I don't want to be noticed. I want to fade into the background and disappear. People tell me that it'll be fine. That most people won’t be able to tell I have the bag. That there's cute covers to put over them. That someone out there somewhere will still want me despite it.

I know these people aren’t wrong, and many people live happy, healthy lives with ostomies. One of the people telling me these things has one themselves. Beyond that, I know that people live with much worse conditions (condition? Is that what you'd call this?). I would never, ever tell anyone with an ostomy that they are ugly or don't deserve love or anything at all like that. But me? I feel… I don't even know how to explain how I feel.

Going to the beach and swimming used to be two of my favorite things in the world. Now the thought of putting a bathing suit on (even a full coverage one piece) is just bonkers. I can't wear anything too form fitting anymore. I've seen pictures of girls with bags wearing snug clothes and I'm not sure what they're doing but with me you can tell. Even if it's empty it’s still there. And that’s how I feel with clothes on. I can’t stand seeing myself naked; honestly, I barely look in the mirror at all anymore. I used to love showers. Now I actually dread them. So yeah, someone else seeing me? It’s not happening. Not any time soon if ever.

Here I am whining about this. Shallow and selfish. I've said I don't want to live with a bag forever. Multiple doctors have said, "But you’ll be *alive*!” As if I’m gonna be excited about it. I know it’s shitty to say that that's not the greatest consolation prize. My whole head is fucked but also… I mean, have you seen the world lately? I certainly wouldn't be advertising it as first prize in any kind of raffle or whatever. But I'm a pessimistic, depressed lump so maybe I'm not the best judge of that type of thing. And, like I said, I know that the people supporting me are right. People with ostomies move on and live normal lives. Eventually I'll be able to look myself in the mirror, and maybe I'll enjoy showers again someday. Stunning may be out of reach—to be honest, I always knew it was— but acceptance isn't out of the question.

I really didn't mean to make this so depressing. Though it really did feel kinda good to get some of these feelings out. The plan was to write the hard thoughts here and not burden my loved ones with this, but then I turn around and give two of them the URL. So hey guys. Love you and I'm sorry. Xoxoxo

5/10/24

[necropocene]

ive been thinking about elaborating more on what maul's various disabilities mean for him and actually tangibly what that would look like. my thoughts below in a clearer way!

due to being cut in his midsection a lot of his gut was either damaged or rearranged entirely. Zabrak are carnivores with probably shorter digestive tracts so its not as much of a problem as it is for humans who need to have much or all of their large intestine removed, but nonetheless he would probably have an ostomy bag + stoma of sorts or scifi equivalent (however this might change between various leg iterations). Its hard to tell how this condition would affect him outside of how it impacts people in real life who have this condition (crohn's disease or severe forms of ibd), but eating primarily meat might make it a bit easier on him? Something I might research more idk... Going along with that he would need an artificial blood dialysis device because he doesn't have kidneys anymore. All of this leads to him most likely having bad nausea/pain or feeling sick when his diet or meal timing changes.

Because of all this organ shifting, there might be more pressure on his diaphragm leading to less lung capacity, however being a zabrak with two hearts counteracts this and he's probably on par with any athletic human.

Due to eating like...garbage and probably fucked up things for many years, his liver had to work overtime and as a result he has some signs of liver disease, though it should be under control post spider legs and rejoining civilization. Likewise his stomach is also probably permanently smaller due to a long period of malnutrition.

Inside his prosthetic waist area would need a Thick layer of cushioning because the waist is not a real load bearing area of the body. Like any other prosthetic, there should be some way for him to detach part of his midsection so he can bathe properly and avoid any skin irritation (but it probably happens anyway if he doesn't do any self care in that area for a while)

His spine was severed so he has some pretty hardcore back pain as well as metal/robotic supports lining the inside and outside of his spine. Using a cane would help as it could alleviate pressure against his midsection and damaged spine, putting that weight towards the ground instead (this is also why i love maul with a cane in rebels).

There's probably ways to regain levels of sensation and tactile feedback through his legs (luke had a very responsive and seemingly sensitive prosthetic hand) plus nightsister magic probably gives some ethereal force connection to increase sensation and feedback. This might also be how maul can resist his body rejecting all the parts that are both embedded in him and against his body 24/7, its star wars there's magic sometimes. His legs are probably rechargable overnight and with some long term background battery (imagine uranium batteries like rovers and other space instruments have) to fill in time between charges. Maybe they can also convert food into electricity i dont know how star wars works.

anyway if you read this thank you! i hope you enjoyed my maul disability headcanons/fan explanations for how his body works. Im not going into any of his mental disabilities bc that's a whole other can of worms but it was very nice to elaborate on a canon disabled character that i care about very much