Jonathan Harnisch's Blog - Posts Tagged "chronic-illness"
A Beautiful Hell: Notes from the Bardo
Somewhere in the distance—though not so far from where I sit—there’s a place I used to imagine as a boy. A place where silence wasn’t emptiness but possibility. Where stillness wasn’t punishment but permission. I live there now. Or maybe I live somewhere else entirely, but this is as close as I’ve ever come to getting there. Removed from all that can be removed, with Georgie. It’s just the two of us. And Claudia, of course. She’s always known the way.
Georgie isn’t real, they tell me. But who gets to decide what’s real? If pain can exist in a place deeper than language, then so can Georgie. He’s the part of me that survived things I’m not supposed to talk about. Things no one wants to hear. But I write them anyway, because not writing them is a worse kind of silence. I’ve done that before. I won’t do it again.
There’s a quiet here. Not the dead quiet of padded rooms or locked doors, but the kind that seeps into your bones and makes them softer. I needed that. I need it still. And in that quiet, I can finally tell the truth. The truth is, I have lived with more than most, but less than some. The truth is, pain doesn’t make you special. It makes you invisible. And then, if you’re lucky, it makes you see things others miss.
I see things.
I see how dystonia twists not just muscles, but time. How Parkinsonism slows your hands until every moment lasts too long. How akathisia makes you pace rooms that don’t exist, your skin boiling underneath itself. I see schizophrenia not as a label but as an orchestra of broken instruments, each playing their own song at full volume, waiting for a conductor who never shows up.
But this isn’t about suffering. Not exactly. This is about what’s left when the suffering softens around the edges. This is about what happens when you stay. When you keep breathing. When you write it all down and call it art. Or life. Or just Tuesday.
I don’t wake up every day feeling grateful. Some days I don’t wake up at all, even when my eyes are open. But then Claudia jumps on the bed, and her purring makes the room vibrate in a way that reminds me I’m still here. That Georgie is still here. That we get another day.
And what a brutal, beautiful day it is.
I write this now, far away from the place I began. Not just the place where the police sirens never stopped, or where every wall felt too thin, but the place inside me that believed there was no other way. I’m somewhere else now. A place I thought I’d only ever dream of. A place where the light doesn’t hurt so much. A place where mature, strong, impossibly elegant women sit across from me and see me as I am, not as I was. And they don’t look away. They listen. They nod. They laugh in a way that makes my chest loosen, just for a moment.
I sit here, and I write. I write because it’s the only way I know to survive. But now I write with a kind of ease. Not because the pain is gone. It never is. But because I don’t have to fight it the same way. I can just let it be. And it lets me be, too.
There are mornings when the tremors are so bad I can’t hold a spoon. Afternoons when my brain convinces me I am already dead, and this is just the echo. Evenings when my body won’t stop moving, and every second is a choice between screaming or silence. And yet, here I am. Not because I’m brave. But because I don’t know how to leave.
Georgie used to beg for an end. I did too. But Claudia kept showing up. She sat at the edge of the bed and blinked slow, patient blinks that said, “Stay.” And so we did.
I’ve heard it said that pain makes you deeper. I don’t know if that’s true. Pain hollowed me out. But it left space for other things. Music. The way Norah Jones sings when you’re not listening too hard. The weight of a glass of wine held in steady hands. The way sunlight cuts across a room in the hour before dusk. The sound of a woman’s voice when she calls you by your name like it’s not broken.
These are things worth staying for.
I have known ruin. More than I ever thought I could bear. The kind of ruin they make films about but clean up at the end so you don’t leave the theater with that ache in your chest. My ruin is not cinematic. It’s slow and ordinary and lives in the details. The kinds of things you don’t notice unless you’ve been there.
The tremor in a hand that used to hold a pen steady. The scrape of a chair dragged across the floor because you can’t lift it anymore. The pause before you answer a question because you’re not sure if the answer is still true.
But here’s the thing. Ruin makes a good foundation. And on mine, I have built something extraordinary.
I live now in a house that feels like a poem I once tried to write but never finished. It has rooms full of air and light, and windows that look out onto a world I thought I’d lost. Georgie likes it here. Claudia does too. And me? I’m still learning. But I’m here.
- Jonathan Harnisch
Georgie isn’t real, they tell me. But who gets to decide what’s real? If pain can exist in a place deeper than language, then so can Georgie. He’s the part of me that survived things I’m not supposed to talk about. Things no one wants to hear. But I write them anyway, because not writing them is a worse kind of silence. I’ve done that before. I won’t do it again.
There’s a quiet here. Not the dead quiet of padded rooms or locked doors, but the kind that seeps into your bones and makes them softer. I needed that. I need it still. And in that quiet, I can finally tell the truth. The truth is, I have lived with more than most, but less than some. The truth is, pain doesn’t make you special. It makes you invisible. And then, if you’re lucky, it makes you see things others miss.
I see things.
I see how dystonia twists not just muscles, but time. How Parkinsonism slows your hands until every moment lasts too long. How akathisia makes you pace rooms that don’t exist, your skin boiling underneath itself. I see schizophrenia not as a label but as an orchestra of broken instruments, each playing their own song at full volume, waiting for a conductor who never shows up.
But this isn’t about suffering. Not exactly. This is about what’s left when the suffering softens around the edges. This is about what happens when you stay. When you keep breathing. When you write it all down and call it art. Or life. Or just Tuesday.
I don’t wake up every day feeling grateful. Some days I don’t wake up at all, even when my eyes are open. But then Claudia jumps on the bed, and her purring makes the room vibrate in a way that reminds me I’m still here. That Georgie is still here. That we get another day.
And what a brutal, beautiful day it is.
I write this now, far away from the place I began. Not just the place where the police sirens never stopped, or where every wall felt too thin, but the place inside me that believed there was no other way. I’m somewhere else now. A place I thought I’d only ever dream of. A place where the light doesn’t hurt so much. A place where mature, strong, impossibly elegant women sit across from me and see me as I am, not as I was. And they don’t look away. They listen. They nod. They laugh in a way that makes my chest loosen, just for a moment.
I sit here, and I write. I write because it’s the only way I know to survive. But now I write with a kind of ease. Not because the pain is gone. It never is. But because I don’t have to fight it the same way. I can just let it be. And it lets me be, too.
There are mornings when the tremors are so bad I can’t hold a spoon. Afternoons when my brain convinces me I am already dead, and this is just the echo. Evenings when my body won’t stop moving, and every second is a choice between screaming or silence. And yet, here I am. Not because I’m brave. But because I don’t know how to leave.
Georgie used to beg for an end. I did too. But Claudia kept showing up. She sat at the edge of the bed and blinked slow, patient blinks that said, “Stay.” And so we did.
I’ve heard it said that pain makes you deeper. I don’t know if that’s true. Pain hollowed me out. But it left space for other things. Music. The way Norah Jones sings when you’re not listening too hard. The weight of a glass of wine held in steady hands. The way sunlight cuts across a room in the hour before dusk. The sound of a woman’s voice when she calls you by your name like it’s not broken.
These are things worth staying for.
I have known ruin. More than I ever thought I could bear. The kind of ruin they make films about but clean up at the end so you don’t leave the theater with that ache in your chest. My ruin is not cinematic. It’s slow and ordinary and lives in the details. The kinds of things you don’t notice unless you’ve been there.
The tremor in a hand that used to hold a pen steady. The scrape of a chair dragged across the floor because you can’t lift it anymore. The pause before you answer a question because you’re not sure if the answer is still true.
But here’s the thing. Ruin makes a good foundation. And on mine, I have built something extraordinary.
I live now in a house that feels like a poem I once tried to write but never finished. It has rooms full of air and light, and windows that look out onto a world I thought I’d lost. Georgie likes it here. Claudia does too. And me? I’m still learning. But I’m here.
- Jonathan Harnisch
