This is a poem about the conversation between my body and the progressive, neuromuscular disorder that I live with. It’s called Spinal Muscular Atrophy Type 2 ( SMA2), it causes a lack of a protein called Survival Motor Neuron (SMN) in my body. This protein is responsible for maintaining and building muscle mass and function. Therefore , not having this protein causes my muscles to slowly deteriorate and then I lose muscle function.

SMA 2:

“You think you can beat me?

I’ve chipped away at you long enough–

Made you weak, made you question everything

I’m the quiet assassin, and I’m winning.

Soon, there will be nothing left–

No fight, no fire, just fucking beautiful silence.”

My Body:

“You’re full of shit!

I’m still here, still fighting–

Every damn day, I refuse to give you what you want!

You can threaten me all you like,

But I won’t let you take my life.”

SMA2:

“You’re stubborn…I’ll give you that.

But I see through your bullshit.

You’re tired, broken, scared, and beaten down–

Why not just surrender?

Why keep fighting a losing battle?

You know I’m going to win.”

My Body:

“Because I am more than your fucking defeat!

I carry hope, I carry love,

And I refuse to let you win.

You may slow me down and cause me pain,

But you will never dim my light.”

SMA2:

“I’m so sick of this!

I’m tired of your resistance–

Tired of you pretending I haven’t already won.

You’re weaker than you think,

And I’m going to crush you!”

My Body:

“You won’t.

You think you’re strong, but you’re just a shadow–

A ghost that haunts my body,

But I am alive, and I refuse to go quietly.

My spirit is strong and you’ll never take that from me.”

SMA2:

“You’re fucking stubborn–

How have I not broken you yet!?

How can you still want to fight!?

I swear, I’ll make you regret every moment that you resist.”

My Body:

“Go ahead and try!

I will fight you to my very last breath,

Because giving up isn’t an option for me.

I am more than your darkness, more than the pain and fear of you.

I will be the one who decides how this ends.”