I Have This Advance Reader Copy Of A Book I'm Reviewing And The Writing Is Awesome In General, The Story

"Disabled " is a neutral descriptor at worst. It just means we can't do some things the way other people can, or at all. It's not an insult, and it doesn't mean we're lesser.

Disabled culture is beautiful and wonderful. Disabled people are beautiful and wonderful. We and our worlds are not a misfortune or a consolation prize.

I made up a way to explain fatigue!

something that’s so frustrating to me is when people (usually able-bodied people lol) tell disabled people how sad/uncomfortable their very existence makes them.

“it makes me so sad to look at u” “just thinking about how hard everything must be for u makes me want to cry” “i cant imagine living like that”

like. that’s your fucking problem to deal with. don’t put your feelings on us like that. we are not a receptacle for your ableism and guilt.

disabled people are not doing anything wrong by just existing. we don’t need to be told how uncomfortable it is to see a person who looks different from most other people existing in public, or even in their own homes. it just feels so unnecessarily cruel, even if it isn’t “intended” to be. it’s not our job to process your feelings + it’s not our job to change for you. fuck off.

My mom likes to tell people that she "doesn't understand" why I don't want to speak to her even though she "gave me so many things."

You paid for those things with my body, mom. Fuck you. Fuck the things.

being disabled with a chronic illness is like. I'll never go back to my old life. This is forever. I'm tired all the time, but all I do is sleep. I'm tired of being tired. I wanna work. I wanna go to school. going to the grocery store tires me out, and I'll pay for it tomorrow. I wanna change my life. this isn't ever going to get better. I'm just gonna be in physical therapy until I plateau. I feel better today I must be faking it. I'm feeling better today I'll use this energy to do some work. I am once again bedridden. My life will never be the same. This is something I'm going to have to deal with for the rest of my life. I guess it's hard to comprehend that.

thirty-four

bday comics: thirty-three

AN: I have an acquired brain injury, and always have a lot of feels about it on my birthday! so, disability bday comics are now a thing :)

[ID: a ten panel comic drawn in simple black ink with messily drawn borders.

One - I sit cross-legged on a sofa with an open laptop in front of me. Text reads: "And what do you do for work?" "I'm on disability." "Oh. And is it permanent?" "I mean. It's been over four years since my mTBI."

Two - Frame zooms in showing just my torso and chin. Text: "So yeah, probably."

Three - I sit forward on the couch with elbows on knees and chin resting on folded hands and sigh. It shows my whole body. I am a white non-binary person with a curly mullet, glasses, and wearing a t-shirt and ripped jeans. Text: The doctor calls me "dear" as she ends the call. It's been a long year."

Four - I stand and walk away. The image shows just my legs and the couch behind me. Text: When I first got injured, permanency was the scariest possibility. The idea of a lifetime of pain and fatigue made survival feel impossible.

Five - I stand holding a cupboard open, my back to the viewer. The open cupboard shows that it's very full of mugs and tea supplies. Text: It's not so scary, anymore. And it no longer feels just like surviving.

Six - A close up shot of a kettle steaming. Text: There's still grief, trapped under my ribcage. But I think there always will be. I've had to put away so many dreams, said goodbye to who I once was.

Seven - Close up shot showing hot water being poured from the kettle into a handmade mug. Text reads: But in the space left empty, new things have grown. New hopes. New dreams. New understandings of myself.

Eight - Close up shot of my hands holding a steaming mug of tea. Text: This injury might be permanent - but it might not be. No one really knows for sure. I love my life. I love my body, and my brain, all the messy disabled parts of it.

Nine - A full shot showing me sitting on my sofa again, and holding a large blanket out in front of me, as if getting ready to wrap it over my legs. Text: If this is the rest of my life, then what a gift to live it. I'm not done growing, hoping, grieving, healing. Still trying, and trying, and trying.

Ten - I sit on my sofa with the blanket wrapped over my legs, leaning against a cushion. I am sketching in a ringed book held on my lap, and my tea mug rests on the blanket beside the book. I am smiling slightly and look content. On the wall behind me is a quilted progress pride flag. Text: It's messy, complicated, and beautiful. But isn't that what life is?

The comic is signed h. graves '23. End ID.]

Have I told y’all about my husband’s Fork Theory?  If I did already, pretend I didn’t, I’m an old.

So the Spoon Theory is a fundamental metaphor used often in the chronic pain/chronic illness communities to explain to non-spoonies why life is harder for them. It’s super useful and we use that all the time. But it has a corollary.  You know the phrase, “Stick a fork in me, I’m done,” right? Well, Fork Theory is that one has a Fork Limit, that is, you can probably cope okay with one fork stuck in you, maybe two or three, but at some point you will lose your shit if one more fork happens.  A fork could range from being hungry or having to pee to getting a new bill or a new diagnosis of illness. There are lots of different sizes of forks, and volume vs. quantity means that the fork limit is not absolute. I might be able to deal with 20 tiny little escargot fork annoyances, such as a hangnail or slightly suboptimal pants, but not even one “you poked my trigger on purpose because you think it’s fun to see me melt down” pitchfork.

This is super relevant for neurodivergent folk. Like, you might be able to deal with your feet being cold or a tag, but not both. Hubby describes the situation as “It may seem weird that I just get up and leave the conversation to go to the bathroom, but you just dumped a new financial burden on me and I already had to pee, and going to the bathroom is the fork I can get rid of the fastest.”

Fuck I am so far from okay right now