A Letter to ALS

Post:
You showed up uninvited.
You didn’t knock.
You didn’t ask.
You just came and started taking.

You took without apology.
You chipped away at muscle and motion.
You tried to shrink our world, our laughter, our ease.
You thought diagnosis meant defeat.

But let me tell you something.
You may have touched the body, but you will never own the soul.

You don’t get to claim Maceo’s light.
You don’t get to erase his fatherhood, his brilliance, his presence.
You don’t get to rewrite our love story.
You don’t get the last word.

We’ve cried, yes.
We’ve broken down.
But we’ve also fought.
We’ve prayed. We’ve adapted. We’ve learned to advocate in rooms we didn’t ask to enter.
We’ve become warriors in soft clothes and hospital chairs.

You don’t know what it’s like to look into someone’s eyes and see them still here
— fully alive, fully brilliant, even as their body betrays them.
You don’t know the sacredness of showing up again and again for someone you love, knowing every day is a choice to keep going.

But I do.
We do.

So let me be clear.
You are not the center of our story.
You are the shadow — and we are the light.
You are the interruption — and we are the legacy.

Because even in this fight, we have found beauty.
We have found rest.
We have built community.
We have chosen joy.

And joy, beloved, is something you cannot touch.

So no — I don’t thank you.
But I do say this:
You underestimated us.
You underestimated the strength of our love.
You underestimated the power of our people.
You underestimated the God who still sits high and sees everything.

We will not stop speaking.
We will not stop building.
We will not stop loving boldly in the Sweet Between.

And you?
You can keep coming for the flesh.
But you will never own the fire.

Signed,
Maya
Wife. Caregiver. Advocate.
Still here. Still holy. Still fighting.