#disabled grief

[jewish-microwave-laser]

woke up in pain for the ninth day in a row and all i can think about is how this exact pain would have me in tears and begging my mom to do something when i was in elementary school, back in first or second grade, and when my mom would insist it's just growing pains and i wouldnt calm down, she'd say either we go to the emergency room (always framed as a massive burden, the one time i agreed to go she immediately walked it back and said she couldn't) or i have to stop bothering her about it. so over time i learned to power through what doctors now consider extreme, severe, and unmanageable pain because i didn't want to put an undue burden on my mom

and the worst part is even if my mom believed me and took me to a doctor, nothing would have happened. the end result would have been the same, the only difference being me actually feeling liked my mom cared about me

isn't that fucked up

[subpar-lemon-bar]

Thinking about Pangea and fatigue

Like you’re standing there

And the next day you notice a little crack in the ground. It stretches out in two directions, as far as you can see. And, well, that’s probably not good, but it’s such a little crack! It’s kind of interesting.

The crack gets bigger. “No problem,” you think, “I can still straddle it easily! One foot on either side. I’ve got this.”

Now, peering into it, you can see that it’s as deep as it is long. Maybe deeper.

But you’ve got this. One foot on either side.

The crack fills with water as it grows. “Neat!” you think. “It can become a little ecosystem and there will be new animals for me to look at.”

And then…

And then it’s too wide to straddle. Comfortably. You can do it if you stretch a bit, but before long your muscles start to ache and strain and you have to…pick a side. So you pick a side. You’re here now, not there, and never mind that they used to be the same place.

Still. No problem. You can always hop across! Just one short hop and you’re there.

Only…

Only you don’t think you can, not anymore. Not safely, anyway.

And, ok, sure, you could scramble down your side, cross the creek, climb up the other side, but…why bother? You’ll just get scratched and wet and muddy, and you already know what’s on the other side, don’t you? You were just there. It’s the same.

So you stay.

The creek becomes a river becomes a flood becomes an ocean as the land splits apart.

You think about your footprints, down there at the bottom of the sea. I was there! I used to walk there! You never will again.

Now you can just see the other side. On a good day. When the weather is right.

There’s no way you could cross, though. Not on your own.

But you remember what’s over there. You know. You’ve been there.

It used to be the same place.

[eyesoftheavatar]

The things you hear doctors say when you are disabled is always medical abuse and neglect.

I have been told my two week long neck pain the was so severe I couldn't turn my head one direction was because I have a fan in my room. Turns out it was because my bed was tilted and my body was being smashed into my head.

I have been told that the visible shaking was "a perfectly normal amount of visible shaking"... what is the "perfectly normal amount of visible shaking" you might ask? None. Everyone has some shake to their hands and such, it should never be visible or noticeable unless when holding a pen or pencil and even then.

"Seeing double is normal" literally isnt still dont know why I do that.

"These seizure episodes are all very different" they werent "very different" they were sort of different in the way you expect epileptic seizures to be different. "You dont have epilepsy" okay then explain why my topiromate gets rid of them? Fuck you.

"You should just exercise" okay how do I do that without hurting my joints due to heds? How do I do that without passing out due to pots? How do I do that without aggravating what is most certainly mcas? "I'll research it" never to be heard from again but to be told to vaguely exercise again.

This is all in one location and I dont think most people would guess the right location.

I've had a doctor tell me to eat a fucking banana when I said I thought my potassium was low again. Yeah that'll fix it.

I've had doctor's over and over and over tell me im too young to have these problems. And then get offended when I end the appointment. "I didnt mean it like that." I dont give a fuck how you meant it, it was condescending and dismissive, fuck yourself.

I've had combative and drug seeking in every single fucking chart I have ever had because I dared to advocate for myself.

You dont just walk in somewhere and get diagnosed with all your fucking problems and chronic illnesses. And you certainly dont waltz into an er and get answers, they cant diagnose you and even if they could they fucking wouldnt because they'd rather send you home with some fucking ibuprofen. I still dont have answers for half the shit wrong with me and even with the answers I do have I have no idea what to do with them except to get fucked. I need a wheelchair in a place that is so inaccessible that 90% of the time its better to just stay home.

And they won't ever give a fuck unless you are a cishet white man or if your cishet white husband tells them its interfering with your sex lives. People have literally brought cishet white men to appointments with them to pretend to be their partners to say exactly that and it got them fucking results.

That shouldnt fucking happen.

I shouldn't be stuck wondering if my life is just... sitting in a room for the rest of my life wondering if there's something I could be doing but the doctors wont tell me. They should be able to tell me how to handle it or refer me to someone who can. But they dont want to do that. So I mourn the person I was and the person I could be instead.

[furi-in-the-night]

Me: "Im not disabled not really"

Also Me: *starts crying because I realised im probably never going to run again. I used to run, I used to run up walls, touch the sky with my finger tips from the highest trees, run and grab, and pull myself up unto a ledge over twice my height.. and I am never going to have that again*

[dragoninacrowsuit]

Although I would still be disabled and have issues in a perfect, disability centred society, I think it's often missed how disabling aspects of society can be. Often even more disabling than my symptoms are the issues with going outside that come with the state of public infrastructure where I live and the long list of things I can no longer do unassisted is steadily growing. Due to my disabilities I've had to use a manual wheelchair and most of these are related to that.

I can no longer:

Take the bus on my own in my local area. This is more due to extreme anxiety I've developed around taking the bus due to my disabilities making it harder. If I miss my bus due to not being able to board (this could be due to another wheelchair user on the bus or a parent refusing to move their buggy) or due to my brain fog (I have more than once missed buses due to this), I have to wait usually for an hour or more for the next bus. I can occasionally handle buses in big cities as they're so often, but I don't live in a big city.

Go from my college to the majority of the high street. This is due to the high street being up a hill from my college and being built on a hill, which is a 15 minute walk for a non disabled person. Even going to the bottom of the street, it often takes upwards of half an hour and exhausts me and this limits me being able to go and hang out with my friends.

Take the train without assistance or any staff telling me 15 minutes isn't early enough for me to arrive when I've pre-booked. None of the trains I have to take have level access, despite it being incredibly easy to implement.

Cook food. My house isn't accessible so microwave meals have become my limit on a good day.

Do any of the sports I did when I was younger and less disabled. I've been ice skating since I was 2 and although I could go on the ice in my chair it's more difficult and not the same experience as I had on skates. I miss skating a lot.

Go out without strangers deciding they can touch me without warning or consent, or ask about my medical information.

Not need to depend on strangers to do everyday things. I get stuck and can't go up steel ramps or hills, I can't use any public transport without a staff member remembering to operate the ramp, or use certain doors due to their weight or needing to open 2 to get my chair through.

Evacuate in a fire reliably.

Exit my college. I can only access one car park and the automatic door to access this is currently broken and has been since last week (this may be fixed soon if I am lucky, but it's a big issue and has already been broken longer than promised). It's heavy and I need someone not in a chair to help me get it open.

Fill in forms. This is an issue when working out benefits or any form of assistance or medical needs.

Commute reliably. I depend on others for lifts to my college where a large number of my friends live, and even lifts to my local town or shops (or even a bus stop if I could use those) as I live in a small cluster of houses surrounded by fields. This impacts my social life greatly.

I don't know what the point of this post is. Maybe it's to illustrate how disabling society and general expectations are for disabled people, or maybe it's just me trying to get things off my chest and vent to cope with the loss of my ability.

[poetrysoidonthavetofeel]

How much longer

Till the illusion shatters

Like the glass of water

You forgot was by the bedside table

I sweep away my covers

At the beginning of the day

And knock it over

And it spills all over my computer

And the shards lie

In my cereal

And I eat it anyways

Because I want so desperately

To be fine

[pussysidon]

Disabled grief is crazy what do you mean I can't enjoy the st. Louis city museum anymore

[ethaninthewilde]

having a disability that would have been easily preventable had I just been treated properly as a child is a different type of grief.

the doctors told my parents I needed surgery. I spent my teenage years telling them i was in pain, asking for the surgery. and they refused. they refused. it wasn't even that we couldn't afford it or we lived somewhere we couldn't access the healthcare--we weren't bad for money, we lived the in the state's capital city. it would've been primarily covered by australia's public healthcare system. it wasn't a risky surgery. but they refused and i still don't know why. something that could've been easily done with and had no lasting impacts had they just gotten it treated has me now in a wheelchair. what was supposed to be one surgery is now at least four and it won't even fix all of it. i tell the surgeon what the condition is and he goes "but that's easily treatable as a child" i know. "why didn't the doctors pick up on it?" they did. "why didn't your parents get it fixed as a kid?" i don't know. i don't know. i will never know. fuck.

i haven't seen my dad in a while but when i talk about my wheelchair i wonder if he feels guilty. i try to love him but i can't help but feel like his choices stole my life from me. what could've been. what should've been. i love my disabled community and what it's given me and i try so hard to be okay with it all and most of the time i am but i miss skating. i miss hiking. i miss sailing and swimming and dance. and i could've had all of that if they'd just said yes to a single fucking basic surgery.