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!
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.
***
Blogging with Alex - your everyday dose of angry screaming!
Okay, I wanna start with thanks to everyone who messages me about this blog. You guys keep this angry lesbian going, I wouldn't have any motivation without you. You're great. Kisses to you.
And shoutout to my dad’s girlfriend who’s stalking me on social media! I wonder of you found me here as well?
Today is one of the shittiest days of my life. And considering my past that is a huge thing. You see, there are days when I’m happily and patiently enduring abled people's antics.
Today is not that day.
Sure, every time I go out with my dad it's An Adventure, so I shouldn't really expect anything else, but apparently life can still surprise me.
Today my dear father told a person helping me with opening door..not to help me. Which proves further he still doesn't believe me that I'm actually, you know, slowly dying.
But hey, it's not like we spoonies have to prove our disability over and over again! It's not like I carry my geneticist opinion with me everywhere! And my disability ID! Not at all!
Except we totally do and I totally am.
We have to prove ourselves all the fucking time. Everyone around thinks we’re faking for social benefits.
Ask any disabled person and you’ll learn that those so called benefits are literally nonexistent (I just learned it's actually nonexistent and not “unexistent”. Huh. The joys of foreign speaker.).
Abled people want our things. They want our bathroom, our ramps, our accessibility devices. Everyone around me keeps saying I only have my iPad cause I wanted a new toy.
Since i got it along with my stylus, I relearned how to draw, I started writing my novel and new fics again, I actually am able to take notes on lectures and I, reading books again cause I finally can hold it. All in less than two weeks.
But the thing is people don't want to see. They don't want to see my progress and be happy with me, they choose to be jealous over accessibility devices I have.
I've got people saying that I'm lucky I cant take care of myself cause I don't have to worry about future. They don't understand that I do. I have to. More than them. I have to deal with fact I'll be dead before 50. You will never understand how that feels unless you're dealing with that. I dread everyday, cause I'm on a countdown.
Not to mention I have no one to take care of me in case something happened to my mum. I literally will be left to die.
But hey, I don't have to worry about finding a job!
You see, you all want our stuff without taking actual disability, you don't want wheelchair, shitty hands, pain, dying. You just wanna nice stuff.
And I know I've written about this before and I'm repeating myself. But maybe, just maybe, it'll stick with someone. It'll change someone. So I'll keep saying that.
On the other news, uni started today and I still have no idea what I should do. On Wednesday I'm supposed to try to meet some of my teachers..and beg them to let me work from home?
The thing is, begging…well. It's not my style. I'm more of a “you won't get me accessible classroom, I will see ya in court” person.
So. Await updates on my hopeless case.
And if you're religious could you maybe pray for my gran? She's having a major surgery and I'm really scared she won't make it.
Thank you for all your support.
A/N: Unedited post. All mistakes are mine and I'm sorry.
---------------------------------------------------
You know,
this was gonna be a different post. I actually almost finished it. But then I checked
facebook, cause I’m a chronic procrastinator. And thus, this post was born.
I disappeared
for a while from here, cause a lot of things were happening at once. One of
them is both fucking amazing and fucking sad – I got professionally diagnosed
by geneticist with advanced EDS type 1, meaning two things: I will get highest
disability benefits, and my health is a fucking disaster. I won’t walk again,
my hands are deteriorating quickly. Dealing with diagnosis is going…well, badly
is one word. I’m trying my best, but a lot of times I’m just very sad and
tired.
Most of
times, I try to avoid social media outside of tumblr, which is my “safe place”
where all disability-related tags are blocked. I try not to think. But couple
of things happening made me make an angry post on facebook, calling out people
who only help disabled folks (focusing on wheelies) to make themselves feel
better. You know the type, right? Yeah.
You see,
lately my mum, who is my caretaker at home, all the time, 7 days a week, went
to job-related course. My mum is unemployed, and tries to find a job for a long
time now, so it’s great! Less great is that no one from my family actually
helped, so she had to leave me alone at home. And it was bad. 4 days now, twice
I had to almost call an ambulance, and once I fell from pain and couldn’t get
up. I’m not fitted to be home alone, and it makes me angry, of course it does,
I’m a grown woman and I really wish I could be independent. But I’m not.
I have two
aunts, I have a father and my father have a huge
family, but no one agreed to help. Cause they all pretend I’m not sick. I’m
bitter as fuck so I’m gonna leave this aside, and focus on what I wanted to
say.
I made the
post about this family, but hey, it was typical angry vagueing, I didn’t
mention anyone. And lo and behold, one of my aunts jumps, angry, asking who do
I have in mind.
And, you
see, it’s where this post brings us. To people like my aunt.
I can’t
really judge my aunt, as her disabled daughter died almost 3yrs ago. She
definitely knows the struggle – of a parent.
She doesn’t know the struggle of a disabled
person, so she can’t put her opinion here.
You cannot
say you’re a good ally, good family member, when you actively avoid helping
someone who asked for help. You just aren’t. You can’t just help us to make
yourself feel better when YOU need it. You gotta help when WE need it. Got it?
When I’m on
my chair and you’re a caretaker you don’t push me or give me stuff when YOU
think I need them, or when it’s comfy for you. You listen to ME.
So, in
short: if you only help when you feel like it, you’re a shitty ally.
You can’t
call and ask if I need help and when I say I do say you’re busy. It doesn’t
work this way.
To my
family: fuck you.
To you, my
abled readers: please don’t be like that. We depend on your help.
To my
spoonie readers: my heart is with you.
Alex out. Cause
I’m too angry to continue.
On Monday,
I was assigned a committee meeting to finally get my disability papers. Like,
you know, parking spot, welfare, refund to my wheelchair and stuff like that.
I dressed all
nice, but not too nice, took my
documents, put on all 7 braces I needed this day, hopped to the car and off I
go. And that’s where the tumblr-worthy drama started.
I took my
dad with me as a caretaker, even though he is, to be frank, a shitty one. But
no one else was available.
So I enter
the doctor’s office, get usual checkup, doctor is being an asshole but it’s
nothing I didn’t expect, I start to explain I have EDS but I don’t have papers
yet for it cause I’m waiting and…
“Get up
from your chair, I know it may hurt but I want to see you walk.”
Well, you
see, as I may limp a bit around house, where I know my mum is always next to me
to catch me, I do not “walk” anymore. I had, and sadly still have, my both
ankles twisted, my knee which likes to move on its own dislocated again, and
just before going out my hip popped off, which not being dangerous or anything
was still quite painful. I knew standing up meant falling down, and was sure
neither Dr. Asshole or my dad wouldn’t catch me.
“Um. I don’t
stand up.” I said. You see, I might been a bit defensive on this point, but
nothing to explain Dr. Asshole’s later behavior.
“What do
you mean you don’t stand up, I want to see you walk.”
“Well, I
don’t. I don’t walk.”
“Move to
the sitting place then.”
So I did,
holding up on my better leg and better hand, arranged my skirt nicely around me
and I sit. Doctor is wincing. I move back to my wheelchair.
“Well I’m
gonna need a psychiatric evaluation. I don’t believe you. You may be faking.”
At this
point I look expectantly at my dad but he does nothing. I remember I am
supposed to be nice to get the papers I need, I bite my teeth so hard my jaw
pops, and leave.
I go to the
bathroom and that’s where it hits me.
Fuck being
nice.
I do not
exist to make abled people feel comfortable. I do not exist to make abled people
feel good. I exist to make myself feel
good. And who even said I need to be nice in the first place? Because I’m a
woman and he’s a man? Fuck that too!
And, you
see, I am not a person to be quiet when angry. So I leave the bathroom and I
start yelling at my dad. I see the
office’s doors are open and I yell even louder that the whole committee is a
bag of unwashed dicks and Dr. Asshole needs to get his head out of his ass. And
that I demand to be explained why psych evaluation.
The doctor
leaves his office at this point. He tells me to be quiet and that I am being
inappropriate, that I could fail a complain but this is not a time nor a place
for me to shout.
So I shout
some more.
At the
point that I leave, he was called a fucker, an ableist and an entitled idiot
(all true). My dad comes back to apologize, and, to be completely honest, I
stand on the pavement and cry.
But my
point is: disabled people don’t exist for you to feel good. We are not required
to be nice. We have all right to fight for themselves. And we have all right to
call you out on your bad behavior.
Was I rude?
Probably, yes. I am not even gonna put it on BPD, I was just very mad and very
tired of being walked over. But am I proud of myself? YES. For standing up for
myself. For refusing to stand up.
So – fuck everyone
who tells you to be nice. You are not required to be nice. Honestly? NO ONE is
required to be nice, whether abled or disabled. You do not exist to provide
pleasant experiences to people around you.
Be bold.
Scream. Stand up for yourself. Be loud, take space. Don’t let them shut you up.
YOU are who is important and YOU is who is worth fighting for.
So fight.
***
A/N: to all
lovely girls who read my blog and found me on tinder: helloooo! Now you know
more than you bargained for about my sex life! I hope you still want to date me
cause damn, this is awkward.
***
I can’t
sleep lately, painsomnia being terrible cause I dislocated my knee (and arm and
wrist and some fingers…) and it’s BAD. Like level 9 bad.
But being
awake at 1am has good sides, like sudden strikes of productivity and creativity
that always hit me at night. So here I am, bringing you my middle of the night
thought. Tumblr would call it nightblogging I suppose? And blame Australians.
I was recently
driving with my uncle I didn’t see for 7 years. Part of my family, dad’s side,
is estranged, and he’s the part of that family, but situation being sudden, we
suddenly reunited. It turns out his wife, and my dad’s sister, works with blind
people. Now, let me just say that being a (hopefully) future interpreter, and
losing hearing myself, I know a lot about d/Deaf and Deaf culture – but I don’t
know hardly anything about blind. So sorry, and please call me out, if I say
something insensitive or offensive.
We started
talking about disability, and beside the fact apparently my uncle doesn’t
consider me a disabled person (hey, nice! Take my wheelchair and my pain too,
would you?) cause mobility issues doesn’t exist in his world, he turned out to
be extremely ableist. “Did you know? They can almost behave like NORMAL people”
level ableist. Yuck.
Being in
pain literally all the time lately, no matter the amount of painkillers, my
usual fierceness got a bit dulled, and instead of huge rant I just sat there
trying to keep my face straight and nodded. People like to take my trained
resting bitch face as an encouragement instead of sign of impeding killing
spree, so he kept talking. And he said a thing that resonated with me so much,
so awfully.
He told me
about a girl who, being almost completely blind, did two PhDs and some
additional studies while “abled people like us” (again, thanks for completely
ignoring the fact I have severe mobility issues and use wheelchair daily??) are
lazy fucks who wouldn’t do it.
And I just
broke. Let me tell you why.
Being
disabled, you suddenly, as we previously stated so many times, become public
property. People feel entitled to tell you what you should do, how you should be, how you should look, behave, BREATHE.
Let’s say
we have two typical girls, average size, white, all in all “normal”, but one of
them is on a wheelchair.
Abled girl
with unshaved legs is a revolutionary feminist. Disabled girl? Doesn’t take
care of herself, dirty, probably smells, disgusting, hit rock bottom.
Abled girl
rocking a messy look with no makeup? Cute. Disabled girl? See above.
Abled girl
dropping out of uni? Probably needed to go find a job, take care of family,
just wasn’t for her. Disabled? FAILURE. WON’T EVER ACHIEVE ANYTHING.
Of course
there are race, being fat, gender and sexuality adding additional layers here,
but in general you see what I mean?
Being
spoonies, we walk everyday having to prove our worth. We HAVE TO study, have to
be successful, be pretty, pampered, in full makeup and pretty clothes. We can’t
cut ourselves some slack. Cause we’re being constantly judged. We’re either too
much or not enough. Too visible – too invisible. Too loud, outspoken, or too
quiet. I’m being hated for being “too much” (advocate, colorful hair, LOUD,
open about my sexuality, my autism, my mental illnesses, yelling at ableists,
colorful wheelchair, you name it I have it) while simultaneously I hear I should
try harder, be more, come back to school, fight through debilitating pain,
PROVE MYSELF.
The issue
here is, for a healthy person that would be too much to stand already, right?
But add constant pain, fatigue, so many really scary health issues,
disabilities being doubled (mobility + hearing loss, blind AND mentally ill
etc.), constant struggle with lack of accessibility… I used to wonder why more
disabled people don’t go outside. Now I know. We’re, as my best friend nicely
put it, forced introverts. Cause society, let’s be honest, doesn’t like us.
I went to
my university yesterday to talk about my return after the leave I took. Let’s
ignore lack of support here, and total lack of accessibility (no disabled
toilet?? Really??). I was told school can consider my request for accessible classes
if they find me WORTHY ENOUGH. I have to prove my worth, prove I won’t drop
out, they won’t lose their money.
See a
problem here?
Being a
spoonie, we have to prove our worth all the time. Or we’re using the air and
shouldn’t exist at all. But what if I don’t want to be a famous spoonie? If I
don’t want to be a wheelchair bound surgeon or lawyer? What if I want to be,
say, a sex worker. I want to be a camgirl. Well, then, first, I’m a taboo (disabled
cam girl??? Unheard of!), I’m problematic, I’m too open about my sexuality
nobody wants to know about (but THEY ASK. See previous post.), and I am not
worthy enough. Same if I want to be something less shocking, and “less
glamorous” than a lawyer, like librarian, truck driver, or a barista (shoutout
to my lovely spoonies in these jobs, you rock!). I either have to convince
people I have a right to live, or I am not given this right.
And this is
what we desperately need to change. Cause there ARE wheelie camstars, just as
there are disabled prostitutes, like there are disabled librarians and truck
drivers, like there are wheelies working in grocery stores or being cashiers at
Tesco. And we’re all worthy. Hell, we could lift Thor’s hammer!
And we’re
glamorous. We’re glamorous when we can’t shave our legs because joint pain,
when we have face hair or boob hair, or when we’re trans or intersex, Black,
latinx (should I spell it with a capital letter? I’m sorry if it’s wrong!),
Asian, ANYTHING AT ALL. We’re all worthy, having a college degree or being high
school dropouts. Being independent or needing constant assistance. We’re all
awesome.
And ableists miss so much by not wanting to know us. And I feel sorry
for them. Cause the most lovely people I met in my life were spoonies. Not
abled, stuck up entitled assholes.
See, my
fierceness is back, cause tramadol is gold. To sum it up: we need societal
change, we need visibility projects and more education at schools and
workplaces. We need to make abled people see more, see further, take their head
from their asses.
But all in
all, we need to stay awesome, and unlearn the compulsive need to prove
ourselves. I am trying all the time. Cause maybe I am a failure, but I am an
A++ awesome failure, having best friends in the world and badass hair. And,
what’s most important – I have time, and I have nothing to prove to anyone,
cause I am my own person.
(note:
sorry for any mistakes, see: pain + tramadol)