It Is PSP, Not Me

Today I saw something profound. I saw PSP.

Not the physical symptoms. Not the diagnosis. PSP itself.

Over the last few weeks, I have spoken openly about the behavioural changes happening to me. As someone who believes deeply in personal responsibility, I have been trying to own every bit of them.

In truth, that has been tearing me apart.

Today, after quite rightly isolating myself because of the start of a cold, which seems not to be so bad, I spent hours alone, stewing. I felt a level of anger at myself and at the people I love that genuinely frightened me. The intensity was completely out of proportion to reality. I was furious with people who had done absolutely nothing wrong, people who had simply respected my wishes and given me the space I had asked for.

I barely recognised myself.

And then I saw it.

For the first time, I was able to say with conviction:

This is not me. This is PSP.

I am not writing this to excuse myself. I still take responsibility for my actions. Apologies still matter. Accountability still matters.

But I also have to give myself some grace.

Just as PSP affects my movement and balance, it can affect my emotions and behaviour. I am increasingly recognising what I believe to be its fingerprints in my own reactions.

If I treat every surge of anger as a personal failure, I risk allowing PSP to destroy my sense of self. If I direct that anger at myself or my family, it threatens the very relationships I treasure most.

I have spent a lifetime refusing to make excuses. This is different. This is accepting reality.

The danger with PSP is that the fight can start to look like the patient versus the family. The patient becomes frustrated with loved ones. Loved ones become hurt by behaviours they no longer recognise.

And both sides can start to believe that the other is the problem.

But increasingly, I think we are fighting the wrong enemy.

The enemy is PSP.

It is invisible.

My family still see me. I still see myself. I still believe passionately in my responsibility to own my actions, to apologise when I am wrong, and to treat those I love with the respect they deserve.

That is what makes this so difficult.

How do you distinguish between your personality, your frustrations, your responsibility, and a disease that is increasingly interfering with them all?

I do not have a neat answer. But today gave me a rare moment of clarity.

I saw a version of myself that did not feel like me at all. And instead of blaming myself even harder, I recognised what I believe were the fingerprints of the disease.

That realisation scares me. But it also helps me.

Because if I can recognise PSP for what it is, perhaps I can learn to direct my anger where it belongs.

Not at myself. Not at my family. But at the disease itself.

I feel embarrassed writing this. I worry that it sounds as though I am letting myself off the hook.

I am not.

I am trying to learn something that goes against much of what I have believed throughout my life: taking responsibility and accepting that something is beyond my control are not necessarily contradictory.

I can remain accountable without holding myself personally responsible for every change this disease brings. Today I saw PSP. Not the diagnosis. Not the physical symptoms. PSP itself.

And for the first time, I understood that there is a difference between me and the disease that is trying to change me.

Please G-d, let me remember that distinction.

I have a feeling it may become one of the most important distinctions of my life.