Crowds, lights, noise, and people – a necessary step back. Please don’t take offence

This message is, in many ways, an apology and explanation to many of my friends and community, who are so kind and caring. It is also my attempt to respond as positively and constructively as I can to the reality I am facing.

Over the last few days, I’ve noticed a significant decline in my condition in a number of ways, which I’ve already written about – the amount of time I am frozen, powered down, or simply largely effectively immobile. I struggle now with even the basics, such as wheeling my wheelchair more than a few metres, simply because I don’t have the strength.

But there has been another realisation as well.

I am at my worst and most quickly get into the worst possible state – often frozen or very close to it – when I am around large groups of people, bright lights, noise; in fact, anything that is not home and completely comfortable to me. I experienced this again on Friday night in synagogue, when many friends – in the most loving of ways – came up to me to wish me congratulations on my daughter’s recent wedding and to see how I was. I became effectively catatonic – like being encased in a shell.

By the time I got home, having left synagogue at the earliest point before the prayers began, I was in a very emotional state because I could hardly move – my eyes, my hands, my legs. I needed help from two people just to get out of the wheelchair and into bed. I had to rest before I was able to concentrate or take part in any real conversation. For a good hour, I felt I had reached a stage I had hoped was still some way off.

To be honest, I cried in front of my children, my wife, and my mother at the thought of how quickly PSP seems to be progressing and my runway.

With some rest I regrouped and was able to take part in most of dinner. Today I stayed away from synagogue and rested, I had a great time with my kids and family, but I am still far from where I was even two weeks ago.

With no medication to help me in this battle, the only thing I can do is reduce the likelihood of these episodes. And so I’ve made a decision to step back quite significantly, out of necessity.

I am going to drastically limit the amount of time I spend in situations involving crowds, noise, and bright lights. At home, with rest, and with my closest family and friends, I am okay. But in larger, more intense environments, I am not. It may sound like a cop-out, but it is not – I simply don’t feel I have an alternative. Other events that are triggering such changes potentially, such as the TIA and the war possibly contribute to this, but the response is still the same irrespective.

This is very painful for me because I value being in synagogue and being part of the community deeply. I will still try to attend at quieter times where possible. I’m not withdrawing completely – but I do need to adapt to where I am right now.

I also want to say – please forgive me if I am not present, or not participating, in the way I once did. This is not a lack of desire; it is simply the reality I am dealing with.

Among the decisions I am taking is also to move forward quickly with publishing my book. I want to get it out in the coming weeks, because I genuinely don’t know how long I will have the ability to write and communicate in the way I want to.

As it happens, after some rest – even with rocket alerts overnight – I had a really meaningful lunch with my family today.

So I do see this as a choice. Not a retreat, but the most positive response I can make to the situation I am in.

I am choosing to focus my energy on what matters most: my family, my closest relationships, and preserving as much strength as I can for as long as I can.

PSP is moving faster than I expected, and faster than many around me expected. I wish it were otherwise. But within that, I am trying to respond as best as I can.

I hope and pray that things continue as comfortably as possible, and that I can maintain my cognition and ability to communicate for as long as possible.