The Contradiction PSP Creates

There is absolutely no question about what I want for my family and friends. I want them to carry on living their lives. I want them to work, travel, celebrate, laugh, go out and make plans without constantly worrying about me. I don’t want them damaged by my illness. I want them to thrive.

One of the reasons we brought a live-in carer into our home was precisely to help make that possible. I do not want my illness to become their life.

At the same time, I need them.

I need their help, their patience, their understanding and, increasingly, their practical support. PSP makes me more dependent on the people around me, whether I like it or not.

And then there is another layer that is harder to admit.

I want their love, their time and their presence. I want to know that I still matter to them. I would like to think I am strong enough not to need reassurance, but when an emoji, a few words of love or a piece of feedback arrives, I cannot pretend it does not lift me. Some of that may be selfish, but much of it is simply human.

The problem is that PSP seems to magnify all of this.

It can become a vortex. My world is getting smaller and, inevitably, more focused on me and my illness. There have already been too many times when I have become overly focused on myself, forgotten what is happening in the lives of others or simply become apathetic towards them.

Even the amount I write about PSP is probably part of that vortex. Writing helps me enormously, and I hope it helps others too, but I cannot pretend that constantly writing about my illness does not also pull my attention back towards it.

And that leaves me sending some very confusing messages.

I want and need my family and friends to carry on with their lives. I also need their help. And, if I am completely honest, there are times when I wish they would spend more time with me, think about me more and remind me that I still matter.

So one part of me is saying: go, enjoy yourself, carry on, don’t let PSP run your life.

Another part is saying: stay with me, notice me, remind me that I matter.

I am confusing them because I am confused myself.

Sometimes I genuinely need help. Sometimes I need reassurance because I am frightened, lonely or simply human. Sometimes PSP and its behavioural changes pull me further into myself. Often, all three are happening at once.

I am not sure there is a neat solution to any of this.

But there is one thing I do know.

However much I may need help, however much I may sometimes crave attention and however powerfully PSP may drag me inwards, my deepest wish has not changed.

I want the people I love to live full and happy lives.

I want PSP to take as little of that from them as possible.