The Vanilla Index

I’ve developed a new way of measuring my emotional state of being and I’m deciding to call it the Vanilla Index.

I decided to chart it today to give myself an overview of how it moves so quickly.

Early in the morning, I found myself feel slow, much slower than normal and then enter a state of frozen: sitting in the garden, eyes wide open, completely still, unable to talk or respond to my wife. Yet despite the immobility, I felt a strange sense of supreme calm. No panic. No fear. No anxiety. Just stillness. It lasted about 5 minutes and then I went to have a lie down.

What surprised me most, when reflecting afterwards, was that in those moments, when it was actually happening, I had zero desire for vanilla ice cream – my favorite go to to cheer myself up.

The “Vanilla Index” was near zero.

But a short while later, after my physio session, things changed. My physio tried to tackle the increasing stiffness in my neck and shoulders — stiffness that feels like it’s reached an all‑time high — and the intense pain in my left arm, now carrying the workload my legs used to handle in steering literally ‘a large number of kilos’ all day in a manual wheelchair. The transition to a manual wheelchair means my arms have taken on a job they were never designed for. This is apparently common to people but added to the muscle rigidity which is a core feature of PSP is a nasty recipe.

My physio joked that I didn’t need a 45‑minute session; I needed an all‑day one. She’s not wrong. Sadly, she doesn’t have the time, and I don’t have the money.

Then I saw a friend, which was wonderful — until just towards the end, when everything slowed down to about 20% speed. My movements felt snail‑like, my brain slow to find its words, and I needed help to get into bed to have a recharge rest.

And the Vanilla Index? Up to 90%. I had a rest and bounced back feeling ok ish and a very good friend and neighbour came round to play chess. By this point I was debating whether I wanted Ice Cream. I was at around 50%. I had an order ready but decided to hold back for the moment while I played two games of chess with a friend. Having lost the game, which is my fourth game today that I’ve lost (0/4) the index was still hovering at the same level, a little higher as I was a little anxious in the dip recently in my chess performance. I guess 60%.

On top of that, a specific stress related to what is by far the happiest day of the last 16 years (since my youngest daughter was born). Not the wedding itself, which fills me with joy, but the geopolitical situation, which affects who can come and who simply cannot. It has nothing to do with me, nothing I can control, and yet it ties my stomach in knots. I know it’s selfish — especially in times like these — but it is what it is.

That alone pushes the Vanilla Index to 95% at different times. Almost half‑a‑kilo‑of‑vanilla territory.

So I sat down to write this blog, hoping to calm down and gain some perspective. I can’t control geopolitics. I can’t control the increasing freezing and slowing down – this is the clear progression of PSP and the actual progression is something I am accepting of. The good news is that when the freezing actually happens, I don’t feel panic. In the moment, there is calm. It’s the before and after that challenge me.

I don’t know if I’ll get through the day without ordering ice cream, but for now I’ve made a compromise: a large pot of strawberry yogurt. At the moment, I’m winning.

Why write about the Vanilla Index? Because it seems to be my current measure of anxiety. When I want ice cream, I’m seeking comfort. When I don’t, I’m relatively calm. Some people turn to drugs, some to gambling — for me, it’s ice cream. There are worse things. For now, I’ll settle for yogurt and a couple of anxiety pills. I feel that recognizing a pattern and acknowledging the situation is at least one important part of the battle.

I can’t control the uncontrollables. But I can look forward to the excitement that fills me when I think about this most important day that’s fast approaching. I’m told there will be no vanilla ice cream at the wedding. And honestly? That’s probably a good thing.

No one ever said having PSP would be easy. It isn’t — not for me, and not for the people who love me. My family and friends are doing the best they can. I wish I weren’t a burden to them, and as I’ve said recently, guilt is a lot of wasted energy.

So I’ll eat my yogurt, write my words, breathe, and maybe spend some time with the kids.

One day at a time. And today, at least, the Vanilla Index is holding steady now at around 30%.