Two Bens and Ten Minutes

This morning, for ten minutes, I was “Normal Ben”.

I didn’t realise quite how extraordinary that was until it stopped. I was genuinely upset at losing that brief period of normality in a way I had not felt before.

I had woken up feeling “PSP Ben”. Slow, stiff and rigid, turning in bed felt like the work of a much older man. My right hand and right leg were barely cooperating. The pain in my legs was significant despite the medication, and the light sensitivity was so bad that I was wearing an eye mask indoors and asking my live-in carer to turn off the lights. The special lenses I already use, even with polarised sunglasses, were not enough.

But perhaps the strangest thing was that I had absolutely no interest in humour.

That matters more than it sounds. My children will happily tell you that my jokes are terrible at the best of times. They are probably right. But I normally want to make them. I normally want to laugh. When the Fog really takes hold, even that disappears. Nothing seems particularly funny. Nothing seems particularly worth the effort.

It is as though someone has turned the colour down on life. I become a stiff, rigid, stuck, humourless and often angry version of myself.

And then, for absolutely no reason I can explain, the Fog lifted.

Not gradually. Not because of a medication change or something obvious that I could point to. It just lifted. I felt lighter, clearer and more engaged with the world around me.

My carer was arranging the cushions on my wheelchair and I advised him not to pursue cushion-arranging as a career. We laughed.

And that was the extraordinary thing. Not that I laughed. That I wanted to.

For a few minutes I wasn’t fighting to be myself. I just was “Normal Ben”.

Then my facial muscles stiffened and I became stuck in a smile. Initially, even that was funny. But then the slowness returned. The rigidity returned. The light sensitivity returned. The Fog rolled back in.

And I became angry.

“Just ten minutes of normality,” I said to my wife and my carer. I may have added a few additional words.

The anger wasn’t really aimed at either of them. It was aimed at the sheer unfairness of being given myself back and then having myself taken away again.

Ten minutes. That was all I got.

Eventually I went back to sleep. Sleep remains my best charger and, when I woke later, I was in a much better mood. But those ten minutes stayed with me.

What struck me most was not how bad I had felt beforehand. It was the difference between those two versions of me. For a few minutes, the colour had been turned all the way back up – and I could see, with absolute clarity, just how far down it usually sits.

I often joke that my writing resembles a yo-yo, swinging from optimism to frustration and back again. Some of that is undoubtedly attitude. But this morning reminded me that some of those swings are not philosophical at all. Sometimes they are driven by PSP itself.

That is perhaps the frightening part. I can feel the Fog taking up more space than it once did. The slower, stiffer and more withdrawn version of me seems to arrive more often and stay for longer.

But those ten minutes reminded me of something important.

The Ben I recognise has not disappeared.

He is still here.

This morning, for ten minutes, I met him again. This afternoon after some rest and some painkillers I am a tired “Normal Ben”.

And tonight, as I head to bed, I hope he is the one who wakes up tomorrow.