Warning

This text contains descriptions of chronic pain, loss, and thoughts of leaving life. Read with care. If you live with pain, you may find echoes here. If you don’t — know that many in our community do, and they write, speak, and share about it. I learned I am not alone. And neither are you.

Epigraph

If it’s true that You exist, God —
put on the judge’s chain. I am precise:
I won’t delay a single day — expect my visit.
If this pain, multiplied daily,
is Your invention, Lord — then it’s torture.

(Makovsky)

Foreword

This text is not for pity.
I’m not writing to be comforted — I’m writing because I was silent too long.

If you’re reading, it means you hurt too.
And I want you to know: you don’t need to be ashamed of your pain.
It’s real. And you are real.

Chapter 1. January 30, 2024

I woke up to my daughter’s call.
Strange.

Not from pain.
Daylight.
Rested.
And most of all — my eye didn’t hurt.

I lay still, listening to myself.
Silence.
No pulse. No nausea. No blow from inside.

First thought:

“Something’s wrong. Maybe I died?”

You know the feeling — when pain disappears and fear takes its place.
Afraid to celebrate, because the silence feels like a mistake.
Afraid it will strike again any second.

That morning wasn’t happiness.
It was an event because for the first time in years, there was no pain.

But I didn’t believe it was freedom.
For months I tiptoed through life, breathing quietly.
As if any move would bring it back.
And the waiting was no lighter than the pain itself.

Chapter 2. September 2, 2019

That date carved itself into me.
Not as a holiday. Not as a birth.
As an invasion.

That morning my eye began to hurt.
Not “scratchy,” like dust.
Not “tired,” like strain.
But cold, as if ice had filled the orbit.

I went from doctor to doctor.
Diagnoses spilled like coins from a broken slot machine:
— cataract,
— “everyone has pain,”
— “get some sleep, take a pill,”
— “go on vacation.”

I came to appointments scraped off the floor.
Listened to explanations that it was “not serious.”
Meanwhile I covered windows with blankets to block the sun.
Locked myself in the bathroom to escape noise.

The pain didn’t come.
It moved in.
I understood: this wasn’t an episode.
This was a new life.

Sometimes I imagined a pirate’s patch.
Ridiculous, right?
But hiding my eye under cloth seemed like salvation.
Let people think it was a game.
At least I’d regain some control.

Chapter 3. Losses

First I lost the car.
A right turn became roulette: would I see the pedestrian or not?

The world flattened.
The picture — a photograph.
Depth gone. My brain stopped filling in space.
The road wasn’t a road anymore — just an image on glass.

And sounds changed too.
They stopped being background.
Each stood alone: clinking dishes, rustling bags, footsteps.
No longer a backdrop — a series of stabs.
Every noise a separate burden on the body.

Each trip was a threat.
One day I placed the keys on the table.
First “for now,” then “forever.” The car was gone.

Next was the house.
Without a car it was a cage. Groceries, doctors, medicine — all required travel.
And I couldn’t. I sold it.
Not because I wanted to. Because reality stripped away choice.

Then came hair.
Once proud — thick, heavy, shining. Now torture.
Every strand felt like a nail driven into my scalp.
No ponytail, no braid, not even a scarf. Everything hurt.

I endured nearly a year.
Then I broke. Took kitchen scissors.
No ceremony, no symbol. Just cut.
Like crossing out a line on a list.

Hair fell to the floor.
With it — another version of me.
Each loss a relief, and at the same time an amputation.
Less pain. But also less “me.”

Chapter 4. When Even a Toothache Is a Gift

Sometimes pain changes its face.
And that feels almost like a holiday.

When my tooth started to ache — I was glad.
Because it was something new.
Not the eye. Not the same endless torment.
Another signal. Another territory.

This pain had a name.
I could point to it: “here.”
A doctor could prescribe something.
A tooth gave the illusion: some pain can be treated.

But nights were the same.
Sleep — three, maybe four hours.
Then waking sharp, dragged back by pain.
Day and night blurred into one corridor.

And in that corridor even a toothache felt like a gift.
Not salvation. But at least change.

Chapter 5. The Pact

I thought it would never end.
Insomnia, pain, life in fragments. Forever.

And I knew: there was an exit.
Cheap medicine. Over the counter.
It once sent me into anaphylaxis.
I knew: a little more — and the lights would go out.

It was my spare key.
I never used it. I just knew it was there.

Sometimes my eyes lingered on the package.
“Maybe today?”
And always — no.

Not because it got easier.
Not because hope appeared.
But because I have children.
And I wouldn’t hand them this weight.

I chose to stay.
With pain. With loss. With sleepless nights.
Better it burns through me — than them.

Chapter 6. Address

You’re reading this — which means you hurt too.
Maybe not the eye. Maybe differently. But you hurt.

But maybe you’re here because someone close to you is in pain.
And you don’t know how it feels. You can’t.
Pain like this is invisible, and from the outside it looks like exaggeration, weakness, madness.
I want you to know: it’s none of those. It’s real. And the one you love is carrying more than you can see.

I won’t say: “be strong.”
I know too well — sometimes it doesn’t pass.

I just want you to know:
you’re not alone.

Yes, “everyone” hurts, as they say.
But not like this.
Yours is real.
And this is hell, where you learn to live not “in spite of,” but “with.”

I don’t write to be pitied.
I write so you see:
you’re not imagining.
you’re not weak.
you’re not insane.

If you’re reading this — you’re still here.
Sometimes that alone is victory.

P.S. Note: The symptoms I describe are part of the experience of people living with cluster headache — considered one of the most excruciating pain conditions.
Cluster Headache Awareness Day is observed every year on March 21, to remind the world that this pain is real, not rare, and that those who live with it need recognition and support.