I know I’ve used the word before, but there’s still much resistance, the result of an internalized ableism that I’m still trying to disentangle from 6.5 years in. I resist because I know that culturally, societally, my value has diminished and using the word feels like handing over a weapon to use against me.
My body is difficult, sensitive (the worst thing to be), a problem, a burden, a blight. I am useless, and what’s worse is that I am out here demanding to be heard, to be given care and support, to have my boundaries and needs respected, all of which makes me the worst sort of disabled person because, let’s face it, I get in the way.
This world is not interested in accommodations and it would be easier for everyone if I simply vanished into the ether of my bedroom, as most of us do.
I am disabled, but I keep resisting the word with my whole being as if, somehow, I can bend reality with my mind and make all of this go away. Apparently, I am also superhumanly powerful.
And then when I can’t make it so, I recriminate myself with all the worst lies that are told about sick people. I must not be working at wellness hard enough. Or perhaps some deep seated part of me wants to stay sick. As if this is such a comfortable, delicious place to be. As if this is malingering: a convenient excuse to indulge in a life of leisure and hedonistic pleasure. It’s shocking how easily this narrative is tossed around and believed. Laying in bed all day, while others have to work sure must be nice.
I want to work. Not in that Capitalist, grind myself into dust way. I’m done with that. But I do have ambitions and dreams that are slipping away with the days as I lay here doing my best just to survive. To breathe through this minute. And the next. And so on.
I remember lazy days languishing in the pleasure of a soft bed. I don’t have those now. This bed is a cage. My personal sinkhole. A makeshift raft against a vast, turbulent sea.
The closest I’ve been able to come to language that can explain what this feels like is to imagine that you have the flu, only into perpetuity. You are weak, bone tired, your body aches, and you feel intensely vulnerable. Except unlike the flu, the list of symptoms are bizarre & lengthy. Nobody knows what this is or how to help you fight it. And because they don’t know, they assume it’s probably just you.
There’s shifting, because it’s the law of existence that nothing stays the same. Not really. So you wake up everyday with the not flu, except there’s no pathway or trajectory toward restored wellness.
Instead, it’s like a rollercoaster you didn’t ask to ride. It goes up, down sideways, around, and upside down in a wildly disorienting but continuous loop. You can remember the moment your body got on the rollercoaster. You replay those early days over in your mind. But there is no end. All you can do is keep hoping and searching for the exit to appear.
I am disabled. This is not a bad word. It is the truth of what is here now and accepting it is the only way I can orient myself in an honest present that recognizes the limitations of this reality — my body’s reality — for what they are. Resisting the word is creating a fantasy that only makes it easier for me to weaponize against myself with the falsehoods the world wants to tell about me.
And really, am I not hurting enough?