Sheer Terror, Unfiltered

I realised something this weekend about the way I write this blog.

Everything you read here is honest. I mean that sincerely. But it is also usually processed. By the time a post reaches you, I have normally drafted it, redrafted it, reflected on it, and slowly worked out what the experience means to me.

That process is real.

It is not performance. It is not spin. In many ways, it is therapy. The act of writing helps me cope with PSP. It gives shape to experiences that otherwise feel chaotic. It allows me to find perspective, meaning, and sometimes even calm.

But a conversation with one of my best friends visiting from London this weekend, during what was in every other respect a special and lovely time together, made me realise something important.

That same process also takes away some of the edge.

By the time I publish something, the rawness has often already been softened through reflection (and much redrafting). The fear has been organised into language. The experience has been turned into something understandable.

And sometimes understanding dulls the terror.

On Friday night, I experienced something I have experienced many times before. My body partially froze, powered down, and temporarily stopped cooperating with me. There was nothing objectively unusual about it. I have lived through versions of it many times already.

But this time, for a few seconds, I again felt something I have felt before, but never quite allowed myself to write about directly.

Sheer terror.

Not anxiety. Not worry. Terror.

A sudden, instinctive thought that one day this may not pass. That one day the wall may not come down again.

Rationally, I understood that nothing fundamentally different was happening. I knew the pattern. I knew I had come through these episodes before.

But terror is not rational.

It arrives before thought catches up.

The feeling itself lasted only seconds. Then it passed. But I realised afterwards that if I waited a few days, reflected on it, processed it, and shaped it into my usual style of writing, you would probably understand the experience without ever quite feeling the edge of it.

And the edge matters.

Because this disease is not experienced as a polished reflection while it is happening. It is experienced first as uncertainty, vulnerability, loss of control, and sometimes fear so sharp it feels physical.

Only later comes the meaning-making.

Only later comes the perspective.

Only later comes the calmer version that usually appears on this blog.

So this article is an attempt to leave a little more of the edge intact.

Not to dramatise the disease. Not to frighten people. But because emotional truth matters too.

By Shabbat morning, I was back in synagogue for the first time in weeks. Closest friends were still here. The weekend was still full of warmth, laughter, conversation, and genuine joy.

The terror had been real because one day it too may become reality.

The beauty was real too.

Both things existed together.