Existential Paradox

There is a brutal paradox in being chronically ill and still fully alive.

I see clearly.
I see my body, my illness, my limits.
I see the present for what it is.

I also see the future, dimly.
Because the future is already here.
Not dramatic, not sudden, but stretched thin over time.
A slow deterioration.
A life that keeps shrinking, quietly.

That is why clarity can become unbearable.

People try to protect me from it.
Doctors. Friends. Sometimes even myself.
They tell me it does not have to be this way forever.
That it might improve.
That my body could respond.
That the fog might lift.

I understand the kindness in those words.
But they do something to me.

When they are spoken by someone in authority, I do not hear hope.
I hear expectation.

An expectation to get better.
An expectation that improvement is the natural state of things.

And when my body does not comply, something corrosive appears.
Shame.
Doubt.
The quiet suspicion that I am failing.
In the worst moments, that I am a fraud.

So I have to stop pretending.

I do not believe I will recover.
I believe I will live like this for a long time.
Then slowly worsen.
Then die.

This is not despair.
It is realism.
It is the duality of existence.

And this is the paradox.

I want to live.
I want pleasure.
I want to feel alive, sensual, radiant, laughing, impulsive.
I want to be more than wise.
More than strong.
More than the one who carries everything with open eyes.

Constant clarity, in a chronically severe life, is unbearable for most people.
We need escape.
We need release.

But almost all of my exits are closing.

I cannot manage parties anymore.
Dinners.
Concerts.
Being with people for more than a few hours at a time.

My body no longer tolerates alcohol.
And yes, I mourn that.

Not the substance itself, but what it offered.
A loosening of control.
A place where my ADHD could move freely.
A brief suspension of clarity.

To be perpetually sober in a life that is brutally lucid feels like a peculiar kind of punishment.

I do not want to be Yoda.
A serene, reflective creature of endless wisdom.

I want to be wild.
Playful.
Uncontained.

My fear is not death.

My fear is losing myself before I get there.
Being reduced to symptoms, to strength, to dignity.
Losing my muchness.

“You’re not the same as you were before,” he said.
“You were much more… muchier… you’ve lost your muchness.”
Lewis Carroll, Alice’s Adventures in Wonderland / Through the Looking-Glass