When Your Own Body Becomes a Stranger
Dystonia Awareness Month — The Storms We Hide, the Families Who Stand in the Rain
There is a kind of fear that comes with dystonia that is difficult to explain.
Sometimes it isn't the fear of having the disease.
It is the fear of admitting that you might.
Because once you say the word dystonia, the possibility becomes real.
And sometimes people would rather live in the uncertainty of “Maybe it's nothing” than face the terrifying question of “What if it is?”
I understand that fear.
I have lived through dystonic storms.
And I have watched my sister fight them—every single day.
So when I talk about dystonia, I am not talking about something I learned from a pamphlet.
I am talking about something that has lived inside my family.
The Storm Nobody Wants to Name
Sometimes it begins with something small.
A muscle pulling when it shouldn't.
A movement that doesn't feel voluntary.
A strange posture.
A cramp that keeps returning.
And we tell ourselves:
I'm tired.
It's stress.
It'll go away.
It's probably nothing.
Because nothing is easier to live with than dystonia.
A diagnosis can feel like standing at the edge of a dark ocean.
You know there is something underneath the surface.
You just don't want to know how deep it goes.
So some people look away.
They keep working.
They keep smiling.
They keep pretending.
But ignoring a storm doesn't make the clouds disappear.
When Your Body Becomes the Storm
Dystonia isn't simply a movement.
For the person experiencing it, the body can become a battlefield.
Imagine being exhausted and desperately wanting your body to rest—
and discovering that it won't.
Imagine muscles contracting without asking permission.
Imagine knowing the storm could arrive at dinner, at church, in the grocery store, in the middle of the night, or somewhere you never expected.
Eventually, you learn something most people never have to think about:
You learn where the exits are.
Before you go somewhere, you think about how quickly you can leave.
You think about where you can sit.
You think about who could help you.
You hope you'll have a good day.
And if you do, you try to enjoy every second of it.
Because you never know when the weather inside your body will change.
My Sister's Storm
My sister knows this better than most.
Her dystonic storms come daily.
Spell after spell.
Her body keeps going until she is completely exhausted.
And sometimes, even when there is nothing left to give, her body doesn't understand the word stop.
I have watched that.
There is an anguish in watching someone you love suffer that you cannot take away.
You would gladly trade places.
You would gladly carry the pain for them.
But you can't.
So you stay.
You help.
You pray.
You cry.
And sometimes, somehow, you laugh.
Because there are moments when laughter is the only thing standing between you and falling apart.
And then I see my sister smile.
And I think:
How can someone who has endured so much still find joy?
The answer isn't always found in the body.
Sometimes it is found in the soul.
The Caregiver Has a Storm Too
People see the person with dystonia.
They don't always see the caregiver.
The husband.
The wife.
The parent.
The brother.
The sister.
The person awake at two in the morning because their loved one cannot sleep.
The person listening to every movement from the next room.
The person who is exhausted but refuses to walk away.
Caregivers become lighthouses.
They cannot stop the waves.
They cannot command the storm to disappear.
But they keep the light burning.
And sometimes they cry where nobody can see.
Because caregivers have storms too.
Their storms are simply quieter.
But There Is Something Else
For me, there is something that dystonia cannot take away.
Grace.
The grace of our Lord.
And the joy He gives us.
I know it gets me through each day.
And I believe it gets my sister through hers.
That doesn't mean we don't hurt.
It doesn't mean we don't get tired.
It doesn't mean we don't have nights when the tears come.
Faith doesn't pretend the storm isn't happening.
Faith tells us the storm isn't the end of the story.
And that changes everything.
Because I believe there will come a day when my sister has a day unlike any she has ever known.
There will be no storm.
No muscles fighting her.
No exhaustion.
No wondering when the next spell will come.
No searching for an exit.
No sleepless night.
No pain.
Just rest.
Complete and utter rest.
And I believe she will spend that eternity worshipping the One who carried her through every storm.
Think about that for a moment.
Let it sink in.
Not angry.
Not afraid.
Not asking “Why me?”
But standing in the presence of the One who gave her the strength to endure what she could never have endured alone.
And perhaps then she will finally understand what we could only see through tears:
Every storm she survived was another testimony of His grace.
Her suffering does not make her weak.
Her faith in the middle of suffering makes her strong.
And I believe her reward in Heaven will be greater than anything this broken body could ever comprehend.
So This Month, Remember Us
Remember the people afraid to admit what may be happening to their bodies.
Remember those who are still searching for an answer.
Remember the person who canceled plans because they were afraid of where the next storm might come.
Remember the caregiver sitting awake beside them.
And remember my sister.
A woman whose body may refuse to stop—
but whose spirit refuses to surrender.
Dystonia may have become part of her story.
But it is not the end of her story.
Because one day, the storm will finally be silent.
And when that day comes,
she won't need an exit strategy.
She won't need to wonder when the next storm will come.
She will simply rest.
And worship.
The same Lord whose grace carried her through every storm.
And perhaps the greatest miracle of all will be this:
After everything her body put her through,
her heart never stopped praising Him.
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