When I freeze, when my body powers down or my eyelids close against my will, I sometimes feel simply stupid.
What is wrong with me? All I need to do is lift my eyelids a fraction, shift my weight forward, take a step. It sounds absurdly simple.
Just move.
And until the moment passes, I can’t. I truly can’t.
The intention is there, fully formed, but the signal never arrives. Somewhere between wanting to move and movement itself, the process breaks down. The brain fails to initiate or properly sequence the command, and no amount of conscious effort can force it through. This has a name, akinesia, though knowing that does nothing to make the experience feel less surreal.
From the outside, it can look ridiculous. Like a bad joke. One moment you are present. The next, you cannot move or see properly, effectively paralysed or blind, while remaining completely aware of what is happening. That awareness may be the cruelest part.
Sometimes the freeze is partial. Like today. My responses lag. Making eye contact is difficult. Standing up from the wheelchair takes far more time than it should. It is not weakness in the muscles themselves. It feels more like a processing delay, as though faulty software is running on otherwise intact hardware. The intention exists. Execution does not reliably follow.
Then there is the vacant stare. My eyes drift away from anything active and settle into nothing in particular. Seconds pass. Sometimes longer. I am not asleep. I am not absent. I am watching myself from the inside, unable to pull back. And again, the word that surfaces is stupid.
I know it is the wrong word. But it is the honest one.
I have spent my life moving quickly, thinking quickly, responding quickly, and it is painful to watch that capacity slip. I no longer panic. I am relatively calm now. But some part of me still believes I should be able to override this. That if I concentrated harder, tried harder, wanted it enough, I could push through.
That belief is wrong. And I know it is wrong. It just doesn’t always feel that way.
In conditions like progressive supranuclear palsy, the networks that initiate and coordinate movement, eye control, and timing, particularly those involving the brainstem and basal ganglia, are damaged. Signals are delayed, distorted, or never sent at all. Willpower does not bypass neurodegeneration. No amount of effort rewires a failing control system in real time.
If I saw a child do this, I might once have assumed it was putting it on, or something psychological, a choice. It isn’t.
That is the particular cruelty of brain disease.
Most illnesses take out a single system, a joint, an organ, a limb. But the brain is the control centre. When it deteriorates, it can simultaneously affect movement, vision, speech, facial expression, and processing speed, sometimes gradually, sometimes abruptly, always unpredictably.
The stupidity is not mine. It belongs to the disease.
I need to retire that word. It helps no one. But I also need to admit how deeply it is felt. And if you have PSP, or love someone who does, and you recognise this experience, you are not stupid either. You are aware. Fully, painfully aware.
That is about as far from stupid as it is possible to be.
