“I am very scared of the day when you stop writing.”

Someone sent me that exact sentence this morning.

Word for word.

And the truth is, today especially, so am I.

Today Feels Different

I woke up feeling very different this morning.

Slow. Not tired. Not unmotivated. Just slow.

Speaking is difficult. Finding my voice is difficult. Even dictating this is a struggle. I am far more sensitive to light than usual.

My right hand is barely cooperating. At times, my left hand struggles too. I need help with almost everything, and I mean almost everything.

Twice today, I went back to sleep, hoping I would wake up feeling different. Usually, rest is my refuge. Usually, it helps.

Today, it didn’t.

The Fear Is Not Logical, but It Isn’t Theoretical Either

Part of me knows there will probably be better days ahead.

Tomorrow may be easier than today. Even a few hours from now may be easier than this moment.

But PSP is progressive, and that knowledge changes the calculation.

When you live with a condition that you know will continue to take things away, fears land differently. They are not abstract. They are not hypothetical. They are rooted in something real.

For me, and for many people living with PSP, that reality can sometimes feel very close.

Why I’m Writing This

Today, I found myself worrying that writing may eventually become impossible.

I do not want that to be true.

I am already relying heavily on technology. Typing properly is largely behind me. Dictation is becoming harder. My voice is quiet enough that I am grateful modern AI can still hear it and I’ve had to rely on AI a little more to make sense of it.

I hope I am wrong about this fear.

In fact, I think I probably am.

Tomorrow may well be a better day. Experience tells me it often is.

But fear does not always wait for evidence.

It simply arrives.

For Families and Carers

If you are caring for someone with PSP, I want you to understand something.

The losses people see are only part of the story.

There are also the losses we worry about before they arrive.

The voice that may weaken.

The independence that may shrink.

The hobbies, routines, and ways of expressing ourselves that help us feel like ourselves.

Sometimes, the fear of losing those things can be almost as heavy as the losses themselves.

Still Writing

I fully expect to be writing again tomorrow.

I hope this is simply a difficult day rather than anything more significant.

In fact, I am reasonably confident that it is.

But today, this is where I am.

Scared.

Dependent.

And still trying to put words into the world while I can.