I wish someone could sit me down and explain to me in easy terms why I reach heights of productivity at 1am when I have to wake up in 4 hours. I really wish.

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As you probably noticed, despite it being a while since last post, the blog got total theme remake lately. So it's not exactly the fact of me being busy that kept me away. Sure, that's true for the first part of the January, when I had been finishing my midterms, but since the beginning of February I was basically free.
But I kept having doubts. As you know if you follow this blog regularly, my family is not exactly perfect. And abusive family can mess with your head pretty badly. And so I let myself believe for a while that what I have to say doesn't matter, and even more - that I have no right to say my opinion, as I'm in the wrong. In the wrong about my rights, my right to live, to be respected. That I should just shut up. That I have no right to help and to aids and so I should stop the fundraiser and hide cause people don't want to see me.
Luckily for you I have a bunch of lovely spoonie friends who called me out on my temporary existential crisis and here I am, as good as new. And with suspicion of lupus, currently in diagnosis. I'm not kidding you, guys. My friends call me a chronic illnesses collector. I think my body just really, really hates me. Can't blame it really, with amount of sweets I devour daily…
Anyway, the point is, I felt inadequate and wrong, and since I spend a lot of time on social media, I felt I'm not being a good person. So I tried to educate myself on the subjects I felt I know not enough about, and one of them was racism. Poland is… very white. So I read, and read, and read, and I started to notice things.
My mum is an awesome ally. She always supported me in all fields, when I came out as gay and then when I had been learning about my gender more and more. When I got sick, and then on the wheelchair. When she found out about how I was raped. Always, she was always there for me. And she is a really great, open minded person.
But, I realized my mum is very casually racist sometimes. And here is the thing - she is only on the topics where she doesn't know what she's talking about, and I'm sure I was the same. Like for example about the lack of Black movies out there. And there is one thing that hit me like a truck full of bad metaphors. It's a lot like people who piss me off everyday with their casual, thoughtless ableism.
Example: one of my teachers who keeps saying I need to go out and meet more people, when I’d LOVE TO meet more people but it's just not realistic when you're stuck in bed for 23 hours a day crying from pain and the remaining hour you try to do uni work. And when you live in a place where buses only visit occasionally and ramps are rarer than unicorns. You get my vibe. I am NOT secluded from people because I want to.
But then again, someone who's not in my skin have no idea about that, and they think they're helping. And I appreciate, really, but if I hear the same stuff twenty times a day, at the twenty first time I'm gonna get mad, cause how many times can you explain??? It's just that this 21st person is unlucky today.
And my point is, we need to explain, yes, but abled people - and not only abled abled, but anyone who doesn't have physical disability, should try their best to listen. We all suck sometimes and I know it took me a while - and knowing a Deaf girl I had a crush on - to start really listening to Deaf people and checking my own privilege. And, well, starting losing my hearing slowly. So my point is not to vilify or accuse people, but to try to explain to them - to you - why the fuck we get so angry when they try to help. And why I yell so much. Ooops.
I think that subconsciously until now I thought people who do that are vile. That they do it on purpose cause they're too lazy to try to listen to me. It took my mum to open my eyes, and make me realize that maybe no one ever explained it. Maybe I'm a first wheelchair bound person they ever met. Or first outspoken one. Or the disabled people they did meet were too pissed to explain, the reality I know all too well. I'm not a patient person, but I'll try to be more, cause that one’s on me.
Then again, it takes being comfortable with your disability to be able to educate people and be helpful and not eternally mad. It's been a year in February since I'm on a wheelchair and only now I keep realizing that I'm actually okay. That I'm not broken. I just happened to be different but world where everyone is the same would be awfully boring.
So - listen to your friendly disabled person, and as a friendly disabled person keep in mind not everyone is out there looking to take your rights away. Sure, sadly a whole lot of people are, but some are just uninformed, I think? We have all rights in the world to be angry, but, at least for me, knowing not everyone is out there hunting me down, helped me feel a tiny bit better.

In other news, I gave link to this blog to my English teacher as an example of both my activism and everyday English writing. I'm bilingual and I'm using English much more often then Polish (trust me on talking to my mum who doesn't speak it and halfway realize she has no fucking idea what I'm saying…), but majority of my work outside of activism is a WIP and I struggled to find finished stories, of the ones I know how to finish quickly. And this blog is what I'm a bit proud of, actually.
Why am I saying that? Cause here goes official apology for the amount of swears I use, I am sorry, I have a mouth like a sailor and I am aware of that, I feel my writing style lacking without it, and it's probably a vice on my behalf. However, I do not feel it appropriate to change it in my posts, cause it's genuine, it's how my train of thoughts goes, and that's how I just am, and this blog is to show a real - as much as that's possible online - me. So. Please keep my apology in mind when I inevitably break into cussing next time someone asks me how do I have sex.

Thanks to everyone donating to my wheelchair fundraiser, I'm close to my goal but sadly I have to get a corset and it's urgent apparently, so that's what I'm gonna spend the money at firstly. Maybe one beautiful day I will stop getting new diagnoses and be able to finally, finally get this goddamn chair. For now, thank you for saving my pathetic life, and expect corset photos and maybe more writing if it actually works and helps me sit up more.
Stay strong!

Every time when I in my good will reach out to people and want to believe they're not so stupid they prove me otherwise. I swear. Every. Single. Time.  

 You might've notice I was off from this blog for a month or so - mostly because Christmas happened and my family outside of me are devout Catholics so there was the whole cleaning cooking suffering ordeal (my mum was cleaning, sister was cooking and I was suffering, don't make the mistake), but also cause no matter how chill I seem on the outside, dealing with upcoming death is…depressing to say at least. I got a little bit antisocial, a little bit sleepy all the time and a whole lot sad. Oh, and I stopped showering, that too.

 Anyway, I’ve been forced to postpone my depression to after midterms, because uni doesn't discriminate and no matter how Dying you are you gotta study. And sometimes beg. Yesterday it was the latter, and I was forced to meet my sculpture teach who somehow cannot understand the term “accommodation” and forces me to do sculptures in clay I literally cannot do cause of my shitty hands and muscle loss in arms. So I went to beg her to let me pass somehow, cause I'm in no way gonna be a sculptor, I just need this goddamn course so I can happily live as a painter slash high school teacher. Ya feel me.

 As I arrived to the uni building, and my uni is intersected into three (or four? Could be wrong) different buildings, I found out, surprise surprise, a staircase with no elevator, even tho the teach said the building is accessible but again maybe that word is also not in her vocabulary not gonna judge. So I was happily and calmly (oh the joys of opiates treatment) in the corridor when this older gentleman spotted me. He was busy boring some poor other student to death, but she went out so it was me - the next victim. 

 And you see, no matter how salty I am on this blog, in real life I'm like the most polite, gentle girl ever. What bites me in the ass quite often but what can you do when you were raised by a woman who apologizes for existing and also is moderately autistic in this quiet, a little bit withdrawn way. I'm a daughter of my own mother and so I am like that too, and also autistic as well, so there wasn't much hope for me. 

 The guy started asking if I'm a student and he seemed just okay-ish in this boring way cause he cracked some unfunny jokes and in general we had a quite pleasant chat. Until. Oh until. Until he went all in, 0 to 100 real quick - and posed one of question I've never, legit never, heard asked so far, and that's an achievement considering bullshit I put up with everyday.

 “I suppose it's not my business but how do you pee?”

 Lol. Hint hint you were right not your business. But. I'm polite yeah? So I bite my tongue while my brain screams at me to tell him “I call ghostbusters how do you pee?” In real Alexa style, and I force this very insincere smile and say I ask mom for help.
 But you see, as I mentioned, real Alexa style would be a rude salty answer and, you see, incidentally real Alexa is me… so before I could bite my tongue again and cherish in the taste of blood, I continue “…why do you wanna watch?” He was offended, obviously, but at least I was true to myself I suppose.

 This post is basically just me telling you an anecdote of how once in my life ableism turned quite funny, but also you know, I had this thought: it's 2017 and we have internet so instead of asking rude questions to wheelchair using strangers on the streets you coulda just google them. But then I wondered: if you google it, will you get an answer? Cause I bet I'm not the only disabled person who's quite pissed (pun intended) with obnoxious strangers irl, and so I doubt anyone wants to continue the same online. 

 So. Here you go and no judgement cause you were smart and googled (or maybe you just read my blog regularly, then full judgement cause I'm fucking terrible what are you doing here).

How do disabled people pee - not paralyzed just EDS edition.
 Let's assume the bathroom is accessible - then I just hold to the railings and move myself and done.  Let's assume the bathroom is inaccessible aka your normal home bathroom for example - then that's why I carry my portable cane with me all the time, shit is tiny and fits into my backpack and it's a lifesaver when I need to get to a place wheelchair won't fit.

 Here you go, mystery solved! So many spoonies saved from obnoxious creeps! Nah just kidding obnoxious creeps don't google their shit. But you did and so I'm proud of you.

 And here's an advice for everyone who's abled and reading this: maybe don't ask strangers how do they pee, cause it's rude, and also they do it just like yourself.

 Since it's midterms and since I'm typing it waiting for my ride to my piano class, I'll just fuck off now. Have nice January people and to lucky polish ones who start winter break soon you're awful awful people and I envy you cause guess who's finals are going through whole January AND February, unbelievable I know.  

 Kiss kiss bye bye and see you next post.

Hey guys! I'm glad you stuck around.
I got a bit behind with posts cause my life went hectic lately.
I only have a short PSA before we get started

I have been told my family read this blog. And now it puts me in a peculiar situation where I am wondering about if what I'm saying is gonna anger someone. And that... that is not how I can be a good activist, when I keep wondering about hurting someone's feelings.
So, if you are reading my posts, and you're my family, and you have something to say: feel free. But in all honesty? I am not gonna care.

I had an unexpected death happen in my family last week. Which in itself is horrible. My mum is devastated, I am shocked, we're all just very very sad. I do not want to, or am allowed to, talk about it more, so just please believe me I am truly sad and mourning. But I also have things to say, and I realize I may seem cold or uncaring here - but that is not the case.

Because what the things happening recently also did, is silenced my narrative about death and dying.
Since I found out I'm ill and I have about 10 expected years of being abled enough to function actively as I do now, and about 20 to live in general, I became very loud and outspoken in the question of ableism narratives in how we treat dying people.
Because... I started to feel pretty alone. The only person I could tell about my fears and pain, and shock, about my time being so constricted and short, was my therapist. One short hour a week was not nearly enough, when I started to have trouble sleeping and felt so empty, so scared.
And what I want you to understand is I do not blame anyone here and I am sad about the dead person (I ask you to respect my mum’s privacy, as she asked me not to say anyone about what happened) but I also feel like I'm suffocating. Talking at home is not really an option - not only is my mum in mourning, so it would be unbelievably cruel of me to talk about my death to add to it all - but she is also in very active denial about what's happening. And everyone has coping methods, right? So I decided to accept hers.

Generally, my friends (and in general people I talked about it to) make it into two categories when I tell them about my prognosis:
One is pity. The “oh no you poor thing” kind. The “but I'm sure they'll come up with a way to treat you soon!” Kind. And I do understand it's hard for them, I do understand it's awkward and you don't really know what to say. I've been there and I am in no way perfect. But this is silencing me. The “it will be fine” thing is silencing.
The other is fake cheerful. The “it's a lot of time still!” one. And honestly, I like this one better. It's at least acknowledging it's actually happening.
Because I do not look for a perfect reaction here. I just look for someone to listen to me.
And I am scared. I am sad. I am so so angry! Why is it happening to me? What did I do? It's so not fair!
I wanted to have children. I can't, and with the disability I have I cannot even adopt if I don't have an abled partner. But I won't see my eventual kids grow up. I'll die when they're in their teens, and it'll traumatize them! There is not a good option here!
Please let me cry, please listen to me when I rant. I don't know what to say either, but I need you to try to understand.

My life kinda halted its course now. I'm not sure I want to do uni, what for exactly? I won't even use my degree. I'm not sure what I want to do with my time and I feel it running out.
Sometimes I wish I was dead already, or I want to commit suicide just to get it over with. Funny, no? I'm scared of death so much I wanna die.
And at the same time… I feel really empty. Like it's not actually happening. I'm pretty sure this is what shock looks like? And I am so very tired of it.
I'm actually starting to understand how serious my illness it, it hit me all at once when my parents (my dad is a cardiologist) started talking about possible heart surgeries for me. It's scary, and it's exhausting to be scared all the time.

This post is a plea.
Maybe there's someone in my position near you. Maybe it is you.
Listen. Listen to your dying friends and relatives about how they feel. Let them talk if they want to talk. Don't suffocate us in silence.
We are so very tired of being silenced.

I hope maybe I lit a light in someone, or in you, to help someone like me. Cause the truth is… we're all around you. Most of us just don't start talking anymore, we've been ignored so many times.

On the end of this post is an update: thank you all for prayers and thoughts for my gran, she is okay and surgery went well. I am so very grateful for your help.

I know most of people reading this blog are my friends, and so I wanted to thank you for being interested in what is in my head. For wanting to listen to me. For taking your time to actually think about me.
W., the meeting with you made me so endlessly happy and let me find optimism in me. Cause it you care about me, and cared all this time, and we didn't even talk for years, and we wasn't even close in high school, if you didn't forget me or think me as pathetic - maybe people are good. Maybe it was that I am surrounded by negativity, but there is light out there in people like you.
Usually after seeing someone I come home and cry, but after seeing you I was smiling. I need more people like you in my life and thank you for giving me hope.

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A/N: Unedited post. All mistakes are mine and I'm sorry.

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