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.

——

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!

On one minute friends.

—

Oh how I love I just literally killed the first mosquito of 2017. In February.

But. To the point.
I want to formally apologize for the lack of posts lately. Who would know dying would be so exhausting. I crashed from maniacal episode (I'm a freshly diagnosed, still unmedicated, bipolar person) to depression and I just kinda…stare at the ceiling and wish I could cry.
But while I was hopelessly turning in my bed tonight, I remembered something that might have been a good idea for a blog post. Or bad. You decide.
I remembered when I was 18 I guess, I was writing a different blog, kind of my thoughts on different subjects. We need to estimate here that 18 y/o me was an undiagnosed, traumatized idiot, with the key word here being idiot. I was in pain everyone was saying was a psychological thing after rape, that was also in a huge part ignored by medical professionals around me. I suppose I wanted attention? Literally I have no idea why I did what I did. It's one of those things I can't remember actually doing, but I know I did. And maybe it was the attention thing, or the fact I was highly psychotic back then and couldn't differentiate between facts and reality if I tried, but the fact remains, I was a total disaster.
You see, I cannot lie. If I was a mythical being, I would be a faerie. It's not to say I don't lie, cause of course I do, don't we all? but I suck at it and it's super uncomfortable for me, i can't keep track and I just hate it. I'm this person who'll come out to you and tell you about all traumas 5 min after meeting you (ask Ki, I literally did that to her and we remain best friend). And when I lie, I almost always come clean, and usually try to escape the consequences if I'm to be honest, cause I'm a coward too.
Anyway, I have no idea why I lied on the blog then, or rather colored the reality as some will say. I'm highly suspicious it was the attention seeking thing, but I just…have no…idea?
I wrote a post about my ex high school, the one I was expelled from (or rather kindly asked to leave if I don't attend therapy, which for me is the same thing cause you cannot just blackmail someone with “stop being mentally ill or lose education” ya know?). I lied in the post about how I came out to my peers and that it was the reason I was expelled with a huge BOOM. Which didn't happen. I was asked to change schools cause yes, they minded me being an outed gay person very much (how I was outed is a whole another story, I didn't do it myself either) but they mostly minded my self destructive habits and was “worrying about me corrupting my classmates” I think was the quote? I have no idea why they'd think so, I was suicidal but not making some suicide pacts with friends! That came later? Anyway, I was half happy to leave and half mad they made me, my mum was pissed, and so I was taken from school and moved to another nearer my city, without a dorm so I lived at home, and put into a loving care of a psychiatrist who then sexually abused me, but hey you cannot have everything.
And so when I posted the Lie Post as I'll call it now, I got two comments - one from someone who recalled their days at boarding school, and one, anonymous, from who said was my former classmate.
And I remember two lines. One was “you're living in some kind of illusion” - which was true then just as is now so I cannot really say anything…
And the other “the saddest thing is, we liked you”.
You may think, as I did back then, and even couple of months ago still, that it's kinda cruel. To say thing thing to who turned out to be a terminally ill person. But the thing is, it was my fault, and they had right to be angry I suppose.
And I kept wondering who wrote it. Was it a girl I hated cause she was better than me at literally any conceivable thing? Something I would now admire as a person who is not disabled and has strength to do stuff, and is amazing at them. But that's post-dying-epiphany me. Cause one thing I learned this rainy cold November day was that life is unpredictable as fuck, and holding grudges will get you nowhere. But I think to forgive everyone and decide to learn to appreciate everyone you have to have this major life changing event happen to you. And it's not to say I'm in any way better, cause I'm not. In any way. I just had a fucked up thing happen to me and I see world differently after it.
Was it the perfect girl’s best friend who I always thought was looking down at me and was weirdly condescending- but she wasn't. It was my low self esteem and a victim complex speaking. She was kind. I wasn't.
Was it a girl who was perfect at English and we competed at it which was totally unfair cause as a bilingual person I shouldn't compete with someone still learning? And she was good. I was introduced to English at 4 y/o and listened to it a lot before that. She was just learning at school, and we were the same level. In which way that was fair? I didn't put effort into my English - she did.
Was it a girl who was so ethereally beautiful I couldn't speak a word to her cause I'd stutter? Who I'm still a bit in love with just cause I was then?
Or her best friend who made me realize I was a lesbian, and skip the whole major crisis connected to it, cause she was so fearless in her love to girls, so open, so beautiful. I owe her so much, she made me stop being afraid.
Or was it a girl I was crushing so hard at my abuser was jealous of her and would beat me over her. I think I still love her somehow, that amazing she was.

And you know, my predicted lifespan is 40, and I'm 22 now, so I'm not going anywhere yet. But I want to, in some way, say goodbye to those girls. Thank them. Cause I have a fast paced life ahead me, full of trying to fit a whole life in couple of years. And I think it's time to say goodbye to the past.
And I doubt they'll read it, they'll find a way to this blog. But maybe they will.
So here you go.
Thank you B (what was your real name? We always called you that) for being someone I still can look up to. Thank you Z for laughing with me when I was sad and wanted to die - I'm not sure did you know? Or was it just that you're always so nice? Thank you M for being a fair rival, someone I admire and wish best. Thank you Be for allowing me to learn to love someone unconditionally from afar and showing me beauty. Thank you O for making me who I am now, for being unafraid and teaching me to be so as well. Thank you C for everything, every smile and small talk, oh gods how I loved you.
Thank you P for being the loveliest roommate and caring about me even after I left, you're an amazing person, you're gonna be famous one day, I know it. I hope to see it. Thank you E for being my best friend back then. You saved my life and I love you still, even though we lost touch.
And to the rest, thank you too. For being for me when I needed you and laughing at me when I was sad. For just being friends in a class, you know?

And you may think this post is weird, and excessive, and unnecessary cause who thinks about high school like that? But it's not why I write it, I don't even write it cause I'm ill.
The year I was at this school I was every weekend at home beaten, raped repeatedly and psychologically abused and tortured, and it's not a hyperbolic speech. And when I came back to school for a week days, it turned out my school psychologist I couldn't trust. But the girls were always there and had my back. Even though I was a terrible, terrible person. And this is about that, cause I'm making my peace with the past.

But it's not only that.
This post is about friendship. About people who are important in your life journey even if they're there only for 5 months, or 2, or a day. About kind people who make me want to fight my uneven fight still.
Maybe my point comes across, but if not, I'll make it clear.
When I found out I'm incurably ill, my world kinda shifted? And I'm in some weird change moment now. And I'm trying to learn to be kind and good. To be nice to everyone. I learn how to say thank you.
Learn with me.

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.

***