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.
***
So. I was to class today. Everyone ignored me, like just blatantly straight wouldn't look at me or talk to me. And you know what? I am tired. I'm exhausted of being so outstandingly different just because I happen to need a mobility aid. I don't know how that looks in other countries but here the casual ableism is thriving and choking me. I'm super grateful I can study from home cause I couldn't stand this..cold..everyday. I'm tired, I'm in pain and I feel sick. And I am jealous. Jealous they don't have to face what I face. That they can just get up and go to class without the enormous struggle I put into going out anywhere. They have this huge privilege they don't even see. And I got tangled up in thinking I don't have a lot of time? Im getting worse and even if I won't die I won't be able to do stuff anymore, I'll be stuck in bed even more than I am now... and my precious time? I waste it because world is against us. And instead of enjoying what I have left I am forced to struggle and push froward in a world that keeps telling me I don't have any value if I don't contribute. So shut up about how mental illness is crippling you. Shut up about how people treat physical illness better. They don't. Mental illness suck, I have it too and I know. But believe me, it's not stopping you from walking on putting your limbs in fire-like pain. You're not a cripple. I, however? I am dying. From a perspective of a person with shortened lifespan: you have a privilege of not thinking about death at age 22.Think about it for a while.
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.
Today,
guys, I’m gonna keep it short. We have several stuff to talk about, thanks to
people messaging me about this blog. And me? I am mad and I am bitter – so the
usual.
Let me start
with my fave one.
I hate abled people.
If you ever
used the disabled parking spot, this post is for you specifically. Offended?
Suck my dick.
It all
started with my hands going bad. I used to use my laptop for everything, as
writing by hand became impossible about a year ago. But hey, we live in the age
of internet, so I’m gonna be fine. Right? Wrong.
About a
month ago I started having trouble typing. On a good day, after twice the dose
amount of oxy, it was…kinda…possible. Today, for example, I’m typing with my
fingers taped and after what I think was 40mg of oxycodone, and later some
blessed soul will beta my typos. Team work, guys.
The thing
is, I’m starting uni soon, and while I’m gonna study most classes at home,
there are two I’m gonna attend. And I cannot take notes.
Along with
mum we decided to buy me an ipad. Ya know, I’ll be able to record stuff, notes
are easier done typing on screen, this stuff. Also drawing on better days. But
for me and my unemployed single mother of two it’s a HUGE thing to spend 2k on
a tablet. Or anything, really. We had our gas almost cut last month and it didn’t
happen only cause the guy was a good guy and saw me on wheelchair and took
pity. Hashtag wheelchair privileges I suppose.
I have a
rich dad. Maybe not insanely rich, but positively loaded. Said dad is abusive
asshole too, and perpetual child support avoider. Also tax fraud. You get my vibe.
Yea, you
guessed that, I gritted my teeth and begged dad for help. Hence my rant.
You see,
when a disabled person gets accommodations, literally EVERYONE wants to use it,
steal it, take it away. I got to uni and everyday have to wait cause someone
with two working legs is going on my ramp. Someone abled is using my accessible
toilet so I peed myself couple of times. People take places in my queue spots.
Not to mention the usual, aka parking spots. You get my vibe.
They – you!
– want my accessibility and “cool stuff” without actual disability.
So I have
this to say to you: TAKE IT. Take my pain, my not working legs, take my loose
joints and constant headache. Take my hands I cannot use anymore and my fucked
future I dread. Take my inability to get to uni classes and a grocery shop.
Take my hand ache from wheelchair. Take uneven pavements. Take it! It’s yours!
And then you can also have my cool tablet, my cool chair, my toilets and spots.
Cause guess
what? I need it! To live! To survive! Like you do every day without even thinking!
To be on the same level as you! And yet I never am, am I? Cause you take everything
and then leave me to literally die, refusing my disability level and welfare.
So. Wanna
my stuff? Take my pain too.
--------------------------------------------------------------
One thing
done. Now the other.
I do not
approve of people who sexualize me and this blog. I talk about sexuality and
masturbation and sex FOR DISABLED PEOPLE WHO NEED TO HEAR IT. I write for
people who need to be empowered. Not for you to jerk it! So stop messaging me
how hot is it that I masturbate. I don’t wanna hear it and I don’t want you. I’m
gay, always was and always will be. That means NO MEN. I’m a lesbian and I won’t
sleep with you. It’s not the purpose of this blog. Come on guys, let’s behave
like adults. I know I’m sexy, you know I’m sexy, we do not need to talk about
something that is obvious and established.
--------------------------------------------------------------
I’m pretty
bad lately with my back going worse and since it’s hard to type lying flat in
bed I’m not sure when the next update will be. Sorry. Hopefully tablet will let
me write more often.
And also,
if any if you are reading this and need to talk to me, to just rant, to address
something I wrote or not at all, I am available at bitterlesbiangrandma.tumblr.com, hit me up at private messenger. I
know some things are not to be said in comments here, so you can talk to me
there.
And in the
end, thank you for being so warm and positive about me writing this blog. I
hope I managed to at least entertain someone, if not teach or empower. It means
a lot you appreciate it.
There comes
a time I wonder, really really Wonder, why am I an activist. Why do I give huge
part of me to strangers on the internet. Why do I out myself, tell you
everything about me. When like 99% of you either do not care, or care from a
completely wrong standpoint, seeing me as nothing as a freak and short time
entertainment.
Well, the
thing is that here, on this forgotten part of the web, I get to speak for the
most forgotten. I am the voice for non self-sufficient disabled people who will
never tell you all the things I’m telling you – just because in other ways, we
can’t.
I ditched
tumblr. I’m gonna give my address to friends and say goodbye. Why? Cause I
stopped doing good there, and harm was done to me.
This is not
any huge thing, or tumblr drama, so if you’re here for that you can with safe
conscience close the tab – I’m not gonna say anything shocking. What I’m gonna
talk is about how reality as not self-sufficient person looks like. How
everyday looks like. You didn’t see it on this blog, lost in topics I thought
more important. In all honesty – they are. But I am just so so tired, so please
take a moment to read.
In reality,
everyday, we are spoken over. By more independent disabled folks even, or just,
like all of us spoonies, by abled people. I heard so many times “I am disabled
too so I’ll say what I want”. And okay. Go say whatever you want. I can’t make
you change.
What I can
do is tell you my truth.
You open my
page, whether Instagram on tumblr or whatever else, and you see a smiling,
glamorous Alex. Face in makeup, colorful clothes, heels. You read about my travel,
my last trip to cinema, my new shopping. You read about me being excited about
uni.
Well. That
is one side. Side I want you to see. In any shoot you see, behind my smiling
face in hip wheelchair, is my sister typing the message under the pic for me when
my hands won’t cooperate. There’s my mum helping me sit on the toilet. There’s
both of them holding a bowl when I puke in the mornings. They fasten my bra,
hold me up so I could do my makeup with all assistive devices in the world.
They push my chair cause wheeling myself on non-automatic thing will break my
bones or dislocate my joints. They check if I breathe cause I took so many
pills and went to sleep not to feel bone pain reaching 10. There’s a whole
shelf of meds and whole team of doctors. There’s a list of prescriptions longer
than all my job applies.
There’s a
paper I just got stamped as “completely unable to work, completely unable to
function in society without everyday help.”
Guys. I’m
22. And I cannot take a shit without help.
But I am
lucky. First, I have good days like ones you see, when I can even do my hair
myself and go out without passing out. I am coherent – I can speak clearly and
I even sign. I am deemed sane, which means my medical consent (usually) counts.
And I have a blog where I can speak up.
If you have
disability, you’re valid. You should have a voice, and your voice should be
heard.
But please,
make space in the community, and please give voice to folks like me.
Who won’t
work. Won’t be useful. Will never leave alone, will never be independent. Will
never make money for themselves. Will be family-tied and so will never be able
to live as who they are – either trans, gay, or do the work they want to do.
You know,
my lifelong dream is being a wheelchair bound cam girl. Or wheelchair bound
porn star. I love sex, I love talking as sex-positive blogger and activist, I
love telling you about disabled sex. But I also want to show you.
Well,
here’s for dreams to never come true I suppose.
If you
walk, don’t speak for those who can’t. If you see, don’t speak for the blind,
if you hear don’t speak for Deaf.
I can only
speak for myself, and I can’t even speak for all EDS folks! I’ll never try to
say a Deaf person I know better their struggle – cause I don’t.
So why do
you think you know better how I feel? Stop.
Maybe if
some of you tried to listen, you’d hear totally awesome things! Cause we, not
contributing to the society people, are awesome.
And I feel
bad for those who will never know us, cause their prejudice won’t let them.
***
You know,
if usually I’m a mess, then since these last two weeks I am A Mess. I would
look for an excuse why I wasn’t writing any posts, but the truth is I’m ill and
it’s the best excuse you can have. Chronic fatigue and pain kicked my ass and I
caught costochondritis (google it, honestly, it’s an awful illness we EDS folks
catch like a common cold. It’s my second one in last three months.) which tied
me to bed running on aspirin and oxycodone, so I was in no shape to write. I
still am, to be completely honest, but I had to share my thoughts on this
lovely topic. Lovely being high sarcasm.
Blowing my
college fund completely, I got a Smart Wheels-like wheelchair. I ordered it in
February, but it was ready just this Monday. It enabled me to go out much more
than I used to, taking the strain of wheeling, which was becoming unbearable on
my hands, from me. And I am now seeing the “casual world” (in opposition to the
world I saw on rental chair, only hospitals and clinics, and once a park) from
the perspective of a person on wheelchair. And oh do I see things.
Month ago I
took part in wonderful interview, the one I mentioned before, on topic of
disability in queer women. Among other things, my interviewer said one things,
that I now tested very painfully in reality.
Women [whether cis or trans] on wheelchairs [I’d add that with visible disability
in general] are perceived as a
completely different, new gender. Gender that is robbed of any sexuality, is
completely non-sexual. They’re no longer women, they’re a different species
that is seen as unable to be understand. [paraphrasing, obviously, as I do
not possess any transcript of the session]
And we are.
We totally are. I saw it before, to less extend, but now I see it in full
light.
It can be
small – like total lack of male gaze on us ( meaning sexually objectifying gaze),
sudden lack of romantic proposals at all, no dates, no interest in us. I’m a
fairly attractive young woman. Hell, I’m gorgeous. I’m also fairly intelligent,
charming, cute, funny. Before my disability became visible, I had people “in
real life” crushing on me, asking me out and so on. Now, as a wheelchair girl,
the only people interested in me are people I met online, who got to know my
personality first, before meeting me and seeing my body. Men do not stare at me
as they did before – which for me as a gay woman is genuinely nice, but still
proves the point. I can both feel it, and had people say that they noticed it
too.
It can be a
bit worse – as people treating our bodies as a public property, touching the
way they wouldn’t touch an abled person, asking inappropriate questions. As
doctors seeing out bodies as sexless. As health providers suddenly forgetting
we have sex lives. As people being confused we are sexually active or even
not-asexual at all.
You
probably wouldn’t grop a stranger woman’s body in public, would you? I had
people, regardless of gender, who did, who even went as far as casually
touching my boobs. But I shouldn’t mind, should I? After all I’m not a sexual
being at all so why would I mind someone touching my private places. (I wanna
specify: I do not think breasts are sexual organs, they’re for babies. But in
general, they’re perceived as a rather intimate part of the body.)
When at the
first time I applied for disability, I got a doctor who had no idea what EDS
was, and from just looking at me told me I’m a nice girl and should go marry
and have babies and not “want to” be disabled. The second time, the same
doctor, I had a card from my usual doctor providing all the details on my
illness and how it stops me from various aspects of life, as studying, working,
driving a car etc. This time? I was not a nice girl anymore, I was just a broken
body. The difference was literally so palpable my dad thought we both went
crazy suddenly cause it cannot be real.
It can also
be my favorite type of ableism aka “I could never date a girl on a wheelchair”.
Or even better, followed by “you’re cool tho, no offence”.
No offence
taken, obviously you cannot see me as a sexual being, as a hypothetical
girlfriend, as I am made of metal pieces and wheel gears and I do not possess a
sexual body at all.
You see, I
was only out a couple of times and I have more than a dozen of these stories to
tell. I am literally the other gender now, I am invisible at best and outward
hated at worst. I am not seen as a woman, as a future mother, future teacher,
future lover, no, I am sexless, I am
completely washed of any sexuality.
You see, I’m
a rape survivor with severe PTSD, I am also accidentally a person on asexual
spectrum, whether those two things are connected I’m trying to find out by
therapy. But even I, not being terribly enthusiastic about sex, do actually
mind this. Very much.
I am a woman. And I want to be seen as one. I
want to be seen as a sexual being cause I am a sexual being. I am not fond of
being treated as a little child.
So to y’all
who could never date a girl on a wheelchair. Look at your reasons why so. We’re
people just like you. Girls, I am just a girl, just like you. I am sexual like
you. I wanna have sex like you – with you. I’m not a different gender.
I’m just a human being. Extremely tired, bitter
human being.
---------------------------------------------------------------------------------
On 28th of July I turned 22. I can't believe I'm 22 and still have to blog about this shit. Two decades of my life and we still have ableism. Yikes.
Anyway, happy birthday to me.
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.
After three
years of avoiding anything even remotely related to love and romance, I decided
to go back to dating scene.
And I did
what every polish lesbian does when in need of meeting new people. I got Tinder
account.
This post
is not about my dating adventures though. It’s about how dating when you’re
disabled looks from the inside.
And it’s not pretty.
After
ditching so many possible candidates who, curiously enough, disappeared among
finding out I’m on a wheelchair, I actually met couple of nice girls. In a mess
of uni finals and me being constantly sick or in the ER, I managed to schedule
a meeting.
And I got
tachycardia syndrome linked to drop od potassium level, and landed in the ER
for the whole day. Hospital Glam aside, I was pretty disappointed, especially
that after that flop our conversations kinda ceased.
I kept
talking to others, and liking one girl in particular (shhhh it’s not a crush!)
I decided to meet. We’re meeting tomorrow. And here’s what I have to say.
Dating me,
and even wanting to be my new friend, you have to realize one thing: you are
also dating my disability. You’re dating my wheelchair. And my illness. It
comes in the packet.
I’ll
probably cancel couple of meeting due to pain being too bad, catching
costochondritis for the 10th time this year, or sudden ER emergency.
If that
sounds bad for you, if you’re gonna make me feel bad for that, here’s the news
for you: you’re an ableist. Surprise!
But it’s
not only that.
To get to
the meeting, I have to beg. I, like
lots of disabled folks, have abusive caretakers. My mum, who cares about me
24/7, is disabled herself, and due to that doesn’t drive. My dad, who drives,
is abusive. Hence, being unable to take a bus myself, not having another
caretaker, I have to beg my father for help. Cue him humiliating me, putting me
down, and sometimes flat out refusing to help.
It happened
today, and I still cringe from some stuff he said. And I’ll have to put up with
him being the worst caretaker in the world.
You may be
curious now, why do I, 21yrs old grown woman, need a caretaker. What does
actually a caretaker do. I’m here to provide an answer: being on a wheelchair
you need someone with you, to help you on pavements, push you up if the road is
steep, handle you things that are too high (like in shops), and so on and so
on. For me, with my hands being affected too, I need constant help because I
can’t wheel myself for a lots of times. I also can’t just stand up when my
chair won’t go through certain terrain. You got me? I need someone to help me
with stuff my body will refuse to do.
But let’s say
I got to the meeting. Caretaker is out, leaving me with my date. If we want to
be actually alone, my date must take the role of caretaker. Even if she’s good
at that, imagine how I feel, with an almost stranger taking care of me in this
intimate fashion? Pretty fucking embarrassed is the word.
As a wlw
(woman loving women) I also have to deal with homophobia that is sure to affect
me, and pretty goddamn scary after last events.
And then
starts the whole “do we match, do we have something to talk about, do we like
each other” stuff.
As usually
on this blog, I Am Bitter. I am already tired before I even went out. Instead
of being excited about the meeting, I am embarrassed, tired, and scared.
Glamorous
life on the wheelchair. Places are inaccessible, people are rude and ableist, I
am in pain.
I usually
have some ideas what to change so the situation would improve, but without
whole societal change here, we can’t reach anything. People’s attitude needs to
change, we need accessibility and more ways to get rid of abuse in families
containing disabled people, because the ways we have aren’t working. Without
that change, all disabled girls, and boys, and nonbinary people, will still
have problems connecting, meeting new people, finding love.
I want to
be that change.
But I also
just want to be 21, love women, enjoy summer and be happy tomorrow.
And while
losing my health, I also lost that.
And this is
so fucking sad.
***
You see me
here blogging about disability issues, and I susppose you have some image of me
already, based on what I write. Whatever it’s good, or bad, I don’t really
mind. I’m happy you’re here, I’m happy to make a difference.
And as you
probably already know about me from my blogging I am Very Gay. I identify as a
genderfluid woman, in a spectrum between female and agender. And I identify as
a lesbian. I am an asexual lesbian, and I am proud to wear a label. I rock
pinky-red flag, I love wlw aesthetics posts, I am all here for the rising
movement of Sapphic girls.
And, being
a queer woman, today at 4am I read about Orlando.
And I am
scared.
I live in
Poland, far, far away from where it happened. But situation here doesn’t make
me feel any safer. It could happen here on a pride on Sunday. It could, and I
am thankful to all the gods it didn’t.
But it made me think about the past, and
I want to tell you a story.
At age 16 I
was in all-girls boarding school in another city, and I first time met an outed
lesbian. I fell in love with the label, I finally felt I know who I am, I have
a place in the world. I was deep, deep in the closet, but I was me. My friend dated girls, and I was
proud of her. Proud of me.
I got a
crush on a girl from my home town. We got together. Long story short, she was
very abusive.
She would hit me in places no one would see bruises and force me
to have sex with her. She would tell me no one will ever love me cause I’m a
lesbian, that I am dirty, that it’s unnatural and that she’s the only person
who’ll ever love me. That I’ll go to hell. She would force me to walk
kilometers to prove me my disability is not real. She wouldn’t let me sit down
when we met. It’s possible some of my joint damage is caused by her.
And she
would tell me she’ll kill herself and kill my family if I don’t sleep with her.
I didn’t
know then that girl can rape another girl, that forcing someone to sex in
relationship is rape too.
She would
shame me for who I am, and she make me feel ashamed of myself. She made me hate
myself and hate the label lesbian. Because it was wrong. And because she was a lesbian too and I didn’t want anything
connected to her to stay with me.
When I
broke off, with severe trauma and PTSD, all I felt was fear. I was out to my
mum and sister, but to no one else. I hated being gay. I hated the community. I
hated everything. I tried to force myself to like men. As you can imagine, it didn’t
quite worked.
It took me over
3 years to heal. It took me over 3 years to love myself again. I don’t
self-harm anymore, I’ve beaten eating disorder. I’m seeing a therapist every
week. And, really,
I’m okay. I wasn’t afraid.
Till today.
First time
in three years, I felt fear that I felt with her. Fear of being a lesbian. Fear
of loving women. Fear of being out.
And I DO
NOT WANT TO FEEL THIS WAY.
All my love
is with survivors and their families, with families and friends of those who
didn’t survive. I pray for them, I send all good energy their way. The dead are
safe and in better place, but we, who remain, have to deal with the loss.
Families and friends with loss of loved ones. We, the queer community, with
loss of being safe in our safe spaces.
I mourn for
LGBTQIA+ youth, who will now be afraid to go to bars, to go to pride. Who will
meet significant barriers in meeting ones alike them, to get into
relationships, to find love.
I mourn for
those of us who are now afraid to come out, or, like me, afraid to be out.
I mourn for
those in bigoted families, who will have to listen or even agree to bullshit
spawn by their relatives, just to be safe.
I am with
all of you, sending energy and prayers your way.
My best
friend once told me my posts here are empowering. I’m glad. But today’s post is
not, I suppose. It’s my way to say how sorry I am this shit in the world ever
happens. How I love all of you in our community. How we need to stand together.
But it’s also
my way to say: cry. Mourn. Be sad. Don’t let them tell you to get over it. Don’t
let them tell you “not to fight hate with more hate.” No. Be angry. Hate. Be
furious.
Cause we
have a right to cry, right to be mad, right to be furious. We will not be
silenced.
To all my
folks in queer community, disabled and abled alike, I stand with you, and I
will not be silent.
And I will
cry.
And I will
scream till the world hears me.
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.
***
I was to my
new therapy, only a second meeting, when it was said.
“Well, you
have to let yourself feel grief. Be scared. Be afraid.”
And it got
me thinking, cause it’s not the first time I was told this when I confess I do
not cry. Like, at all. Like people think I need to be scared, like it’s taken
for granted I MUST be scared.
The thing
is. I am *not* afraid. I worry. A lot. I overthink. I can't sleep. But I am not
scared.
It's sad,
when you look at it - someone so used to pain they are not scared of their
whole future life being pain, worse pain. But it is what it is.
I am okay
with my chair. I am happy I'm on my chair.
And that's
what people can't seem to understand.
I have a
stalker. My relationship, one where I ended up raped, abused, severely beaten
up, was as you can imagine a rather dramatic thing, with a rather dramatic
ending. I cut all the ties connecting me with my ex – except my facebook
account. How do you ever chance your facebook account after something like
that? I blocked her, that was all I could do.
But I
forgot she had friends, simply cause for three years she didn’t let me have
any. And one of her friends (at least I think it’s her friend) is actively
stalking me. And by stalking I mean obsessive checking my account, liking
posts, always lurking – and messaging me. I also met her couple of times
outside, but she was never trying to approach me, so I let it be.
Today my
stalker found out I am on a wheelchair, and started to write a huge soliloquy
about how sorry she is. And me, being my borderline self, and having no self
control whatsoever, flipped my lid. Cause it’s my big pet peeve – people saying
how sorry they are I am disabled. I wrote her a message, as nice and proper as
I could be (which is not much usually, let’s be honest) telling that there’s no
need to be sorry because I am happy, and I refuse to be treated as worse.
And she was
SOOOOOO SHOCKED. She couldn’t comprehend I could be a wheelchair user – and
happy. Happy??? I should be weeping, mourning my lost legs, I should be
suicidal and seeking active help.
We all
should, shouldn’t we? How many times had you someone expect you to be sad
because you are disabled.
Surprise! I
am not sad. I am happy. I live a full life, with wonderful friends, great
family, travelling, hobbies, nice clothes and pretty makeup and fucking awesome
wheelchair gear. I am perfectly okay with being an EDS baby. Sure, there are
bad side, a shitload of them. But I am not gonna be stopped by that.
I live with
chronic depression, caused by EDS. And I am not gonna be stopped by that
either.
We are
normal people. We live normal lives. We are happy, we are sad, we are mad, but
we’re not mourning the fact we’re spoonies like society expects us to. WE ARE
NOT WORSE. We are just as worthy as an abled person. It’s that simple.
I refuse to
be told I am supposed to be mourning. Yesterday I got officially diagnosed with
EDS hypermobile type 1 or 2. An I am celebrating, cause official diagnosis
equals a whole lot of benefits. And yes, I am gonna have heart issues, I am not
gonna walk again, I am gonna be in pain my whole life and I am not gonna be able
to be who I wanted to be AKA teacher and interpreter cause I’m losing hearing
and my hands are in very bad state already. AND I AM HAPPY. It’s May. There are
flowers, I have lilacs in my room and I can feed my bunny fresh grass. I am
going back to Uni in September and I have a date next week. My hair is long
enough for updos and I bought killer pink-ish nail polish. I live. I am gonna
live. I am gonna live till my illness kills me, but I am not gonna be sad. I am
a person who happened to be born with a bad gene. So is my sister, and so is
lots of my friends. And this is not who we are.
I refuse
for it to define me. I do define myself as a wheelchair user or EDS baby on
social sites, I do, just as I did with BPD and autism before my official
diagnosis. It’s simple – easier to find people like me this way, easier to
connect. That’s why I have EDS in my tinder profile – as it made me meet a
great girl who also has EDS and we probably would never meet irl among
thousands of people on streets of the city. But I refuse for my illnesses to
decide what I can or cannot do or who I’m gonna be. You can bet your ass I am
gonna try that art school before my hurting hands stop me, and I’m gonna try
interpreting before I go deaf. And I’m gonna wear short sleeve even though I
have huge scars and I’m gonna go out and laugh and smile even though – and BECAUSE
– I am on a wheelchair.
And I am
not gonna cry cause this is who I am. But there are going to be spoonies who
cry. Who mourn. Who are sad and depressed BECAUSE they’re ill. But then they’re
gonna go out and be happy. And that’s what I want all you abled folks there to
understand. That is what you cannot fathom. We are just as whole as you, and we
are just as able to have a range of emotions not connected to our disability as
you do.
Cause guess
what? We’re people too.
*mic drop*
I feel like
I should probably wait with saying that for when this blog has more followers –
or any followers for that matter. But I can’t hold it in. I am ANGRY.
I came back
from yet another geneticist saying that yes, it’s probably EDS I have, but they
can’t be sure, cause I apparently only show symptoms since I was 16. And I
cried so much, cause I literally have ALL EDS symptoms, and the ignorance of
doctor’s on the topic of rare illnesses significantly holds my progress back.
So I sat my mum, and gave her a list of collagen disorder symptoms, and asked
her if I had any as a kid.
And my mum
was like “All of them. But we were said this is normal.”
And I
fucking flipped.
How harmful
the trend of saying “she’ll grow up from this” or “it’s normal for a kid” is. I
was born with two dislocated hips – a typical EDS thing for babies. My parents
were told it’s normal for a baby to be born like that. Then later, I kept
dislocating joints, I was almost always in some kind of cast or whatnot, but
what doctors said? She’s fragile built, she’s delicate, it’s normal.
I have
heart issues. I probably have POTS. I was told “it’s typical for menstruating
teenage girls”.
I have
ongoing depression since I was like 6. “Emotional female”.
So, I
scanned myself. I asked myself: “what things here you have but thought are
normal and everyone does?”
Bendy
fingers (I can do 90 degrees flip back with one of my fingers. DISGUSTING.).
Chronic headaches. Poor eyesight. Always cold. Too delicate skin getting red
easily. Legs pain (not connected to joints pain), feet pain. Muscle aches
everywhere. Exercises making me worse. Constant fatigue. Trouble breathing. Arrhythmia
and suffocating feeling when in pain without connection to actual heartbeat
issues (idk how to phrase this one, sorry if it’s wrong.).
And on. And on. And
on.
I never
told my doctors that, cause, obviously, I thought it’s not connected to my
loose joints, pain, and my chronic illness problems in general.
How many
more people like me are out there? Who never knew they can NOT BE in pain, they
can LIVE NORMALLY, that life is not that fucking hard, they’re just ill?
It’s so
fucking harmful we don’t talk more about it. That no, life is not supposed to
hurt. You can get help. IT’S NOT NORMAL TO BE HURTING.
I’m seeing
another doctor on Wednesday, and I hope this one will listen to me. And I’ll
keep looking, I’ll keep fighting for an actual diagnosis, for official
diagnosis, even though there is really no doubt here I’m an EDS baby. I’ll
fight for a wheelchair refund, fingers braces refund, wrist braces refund, SO
MANY FUCKING REFUNDS GOOOOD.
But, most
importantly. I am gonna spread awareness. Because I’ll be damned if I let other
kids and adults suffer like I did for almost 22 years.
If there
are any EDS babes like me reading this, please let me know? The more of us, the
better.
***