isolation sucks

Being chronically ill and isolated sucks.

Yet society is deadset on making itself as hostile as possible for people like me to survive in it. I wish our communities fought against the normalization of death/mass-disablement and did more collective action like mutual aid. Instead, folks like me get tossed out as inconvenient and left behind.

It hurts even more when my communities claim to 'leave no one behind' and yet people like me (millions of us) are being left behind anyway due to lack of accessibility (Covid mitigations are part of accessibility by the way) and mutual aid to aid in our survival in an increasingly warming, hostile-to-life world.

It's so... exhausting and dispiriting.

Check in with disabled people. Aid us and support us, and please stop leaving us behind. Be accessible, please.

#Accessibility #MutualAid #CollectiveCare #PandemicMitigations #StopIsolatingDisabledPeople

Sometimes I think about writing a musical, but it'd be of my life. It'd be limited to these four walls.

In the dark of night, I lay in my bed and listen to sappy songs, and think about how the walls of this house have become the limits of my in-person world. Like my cat, we roam its interior. Sometimes, when I'm well enough, I stand with crutches and pretend I'm on a hike. Quark guides me through the doorway of my bedroom, down the length of the kitchen, and into the living room.

I sometimes pick him up and dance in my wheelchair with him on my shoulder, and sing about his fluffiness. When I get out my instruments, he comes to investigate. When I lie down too ill to move, he jumps up next to me. He knows my pain.

Sometimes I'll arrange some boxes to make it seem new. Quark enjoys this. He jumps in them and looks so pleased. I maneuver around them, and I sing to him about the adventure.

But in the end, I sit in my wheelchair and think of how quiet the house is. How long these last three years have been. How so many of my close friends in town have slowly retreated into their own worlds, talking to me less and less.

My texts go into that void. Sometimes I get an answer, but sometimes only silence returns, and fear clutches my heart. Did Covid take them out? Or is this a sign of them no longer wanting to reply? Will I lose yet another friend?

I'm a reminder of what others don't want to see.

I'm the essence of the truth that many wish to deny.

Each breath I take, I take in spite of our society's eugenic policies.

Each day I survive, I do in spite of the world's crushing indifference.

Each week I get through, I do in spite of the destruction and hatred of those in power.

In these four walls, I exist still. My cat and I stubbornly persist despite the world wishing to erase me.

I think of how if I had the energy, the health, maybe I could capture this in a musical. To show the world what it's like to be trapped in these four walls. To be lost and forgotten by society, to be left behind as the world pretends the pandemic and climate change disasters aren't real. To be forgotten by those who claim to fight for people like me, who fail again and again to be accessible and envision a future that includes people like me thriving.

What would it be like for others to hear this pain written in song? To be imprinted on their hearts? Would they cry? Would they tune me out? Would any of it matter?

Music holds power. So does the words we write and speak.

I haven't felt well enough to compose, so I improvise on my keyboard, on my baritone ukulele, but my fingers soon begin to hurt, my body aches, and I lay down and look up at the ceiling.

And I weep.

#CovidIsNotOver #StopIsolatingDisabledPeople
#ReflectingOnLife
#NEISVoid