Poem: Rare

I wake up each day,  knowing that I'm rare—  

but not the kind of rare you frame on a wall  

or keep locked in a glass case.  

I am rare in the way that no one understands,  no one knows my name  

except when it's whispered between white coats  

over flickering screens,  

no cure on the horizon, no relief in sight.

They call it "chronic,"  

like it's just something to live with,  like a stain you can’t wash out.  

But it’s not just a word—  

it’s a shadow stitched to my spine,  a ghost that haunts my veins,  

Shooting through my body like faulty wires.  

They say it's not deadly—  

not yet, not now.  

But the tightrope I walk,  

day after day, could snap  

with any whim of this disease. 

a misstep, a whisper from my cells that says,  

“This is the moment."

The fear isn't sharp—it's dull,  

grinding me down to dust,  slowly,  

until I wonder who I am under all this weight.  

I am waiting—  

but for what?  

For life? for death? for some middle ground

that doesn't exist in the language they speak.

I could scream, but no one would hear—  

because when you're rare,  you're invisible.  

I am alone in this crowd of faces,  

trapped in a cage of flesh and bones,  

and all their eyes see are symptoms,  but none of them see ME

How can I explain what it's like  

to live every moment knowing it could be your last—  

but also knowing it probably won’t?  

To have the clock ticking, but never see the hands move.  

It’s like drowning in air,  surviving in fragments,  

breathing in the fear, exhaling the unknown.

I am rare—  

a curiosity in the corner,  a question without an answer,  

and I wonder, how long can I hold on  

to a life that is neither life nor death  

but something in between?

There’s no finish line,  

no light at the end of this tunnel.  

Only shadows.  

Only the quiet ache of knowing  

that I will keep walking, keep fighting,  

keep breaking down  

until there is nothing left  of me

Only this rare thing I have become.

-Giusiana