Struggling to Stay Me

People will look at me and see original Ben. Some will even say I’ve grown an edge — developed a new career, found more meaning, become more spiritually aware. Something is off, though. I realised it at 3:00 this morning.

I’m not a doctor, not a scientist, and I can’t speak in medical terms — but I can explain what this is, physically and physiologically, as I experience it.

I’m not as interested in things as I was. I mean this in a personal way, not as any reflection on my friends or family — I love them and I need them now more than ever. This is an explanation. An honest, deep, true reflection.

I used to be on my phone constantly. Someone called and I would answer, or message back immediately — “sorry, can’t take a call right now.” I waited impatiently for replies to WhatsApp messages and emails, watching for the double blue tick to arrive. Super alert. Super empathetic. That was me.

Now I’m simply not. I don’t seem to care so much. I don’t want to respond to messages. I don’t want to answer calls or make them. I can’t seem to be bothered.

There are partial explanations: I find typing hard, I find vision hard, I’m tired. But there are workarounds for those. Right now I’m using dictation software to write this, capturing a moment of waking clarity — a realisation I needed to get down before it slipped away. I dictate volumes. But honestly? I’m not really interested in talking to people.

I would love to say this doesn’t extend to my closest friends and family. It extends there less — but it still extends there. I feel duller than before, and absolutely not because I want it that way.

I could put it down to ageing, to stepping back from work, to having less to do, to tiredness. But I think we all know the answer.

This is PSP. I still don’t know exactly which aspect — whether it’s the apathy that is well-documented in the condition, whether it’s the Alzheimer-related tau protein it shares with Alzheimer’s, whether it’s some kind of defensive mechanism. The honest answer is I don’t know. But I know the feeling. I look at my phone now with something close to revulsion. I can’t fully explain it, but I know it’s true.

I’ve noticed that my drive to write about politics and current affairs has dropped noticeably. Not for lack of time — but the idea of writing a LinkedIn article, for example, now feels like a chore. I can’t build the passion or energy for it.

So why the books and the blogs about PSP? Because I am passionate — beyond passionate — about communicating what it is to be a patient, for as long as I possibly can. It keeps me going. It keeps me who I am. It keeps me tethered. But it is hard — and it is probably going to get harder.

So if this continues, this is my advance apology — though it is less an apology than an explanation. I cannot really apologise for something that is not within my control.

No doubt there will be moments when the fog clears, when I feel more engaged, and you’ll notice the difference. But this is how I feel right now. It is 3:39am on 7 April 2026. I haven’t checked my WhatsApp. I haven’t looked at my emails. I haven’t checked Facebook comments. And I find I don’t much care — which, just two months ago, would have been unthinkable.

Perhaps the hardest part of all is this: PSP has no cure, no treatment, no mitigation. And as I write this I realise, with genuine grief, that I may have already missed the window to connect with some people I love and haven’t seen in a long time.

I am trying to write a book about the patient’s experience of the PSP journey — a companion to the one I published in November — but I’m not sure whether I’ll make it in time. Writing, at least, lets me hold onto these moments and pass them on. I’m going to keep fighting and fighting on this front for as long as I can. I need your help and feedback to do that.

Maybe that is the best I can do: force myself to remember that I need to check my phone, stay connected, and explain to people why I’m struggling. Because it genuinely is not that I don’t care. Behind this mask — this mask that is descending, this fog covering me — I am still the same person I always was. I hope you remember that.

Lastly: if I don’t respond to your messages, if I don’t take you up on the offer of a chess game — please don’t stop trying. But please understand this is real. Please don’t say we’re all like that, because what I’m describing is something specific and documented. I’ve seen it in support groups, again and again. Worst of all, it damages the relationship between those who love each other most: spouses. I’ve read spouse after spouse on Facebook groups describe how their partner became unreachable — someone they cared for rather than someone they truly shared life with. That is the single most upsetting feature of the entire PSP journey.

I used to tell myself: this won’t happen to me. I hope this article is a reminder — a marker in my fight against PSP — that I am holding on to my empathy and my love for as long as possible. But it is, for me, a warning sign that something is changing. And I am deeply, deeply concerned.

If this article has resonated with you, please pass it on to friends who may not have seen it. More than almost anything else I have written, I want people to understand what is described here — not for my sake alone, but for every PSP patient and for every person who loves one. I also want my friends to know that this is happening, and that it is not me ignoring them — and not them having done anything wrong.

A note for those who know me: I have always been meticulous about removing em dashes from the proofreading AI used on my writing. To be honest, before AI really became a thing, I didn’t actually know what an em dash was — I seem to have missed that class in English grammar. I’m using dictation software now, which introduces them automatically, and I no longer have the energy to remove them. Please don’t think this article was written by AI. It is just the dictation tool.