Something Most Precious Lost

Leading the prayers on the High Holy Days has been incredibly important to me — more than I probably ever admitted, even to myself.

I have been doing it for nearly 30 years, starting in Sheffield, then London, and most recently in my home community.

I was dreadful at first and never remotely professional, but I felt such awe, trepidation and deep responsibility that I loved the opportunity to try to bring both myself and my community closer to G-d.

It was never easy. Every community was different. Every synagogue had its own traditions, expectations and nuances. Over the years I learned, adapted and slowly improved.

For the last few months, the gabbai — the selfless volunteer and friend who organises the synagogue’s prayers — has reassured me that I was booked in for next year come what may. But deep down I already knew the truth. Physically and mentally, it is simply beyond me now.

When he asked me again this week, I think we both understood immediately. The game is up. I have withdrawn. He has not fought it this time and he is right.

The truth is that I am gutted.

Leading the prayers had become more than just a role. It was a sign that I could still do something meaningful, something spiritually important both to me and, I hope, to others. It connected me to a sense of purpose, identity and continuity at a time when so much else has steadily fallen away.

And it really is the right decision. It is time for others who are stronger than me now, more physically capable and with greater energy. I know that completely. But knowing something intellectually does not stop it hurting emotionally.

This week brought another reminder of that reality.

For two days I tried re-engaging with my electric wheelchair, convincing myself that perhaps I could still manage it independently. It ended in total failure. Yes, at my best, with every variable somehow aligning perfectly, I could probably drive a Ferrari again — but that does not make it safe, sensible or sustainable.

Last night I was so exhausted and disoriented that my wife and carer had to get me to bed. My carer did an extraordinary job of safely controlling a fall.

And still there are moments when I convince myself that this is not really happening — a moment here or there when I am feeling stronger, when with all the force that is within me I can stand up and let go of the bars in the bathroom and, just for a moment, try to resist the backwards pull that would claim me the instant my wasted energy gives up. And then the stupidity of it hits me, and I remember that one fall could take me out entirely. And yet still I dream that my body is not going through this nightmare.

But it is a completely false reality. When I look at a photograph or video I realise that I am living through the throes of a terrible journey that is taking its toll in ways I can no longer deny.

The pain in my legs shifts and moves in ways that make it impossible to pretend this is simply physical weakness I can fight through. I am seeing my doctor on Sunday, but I already know what this is. It is neurological. It is my brain turning against me.

I am disappearing. Slowly, stubbornly, with far greater cognition than many thought possible. Despite having a carer, I still cling to every fragment of independence I can preserve, often in defiance of logic and safety. But I am disappearing nonetheless. Accepting that I can no longer lead the prayers on the High Holy Days is simply another manifestation of that.

I will adapt, because there is no alternative. And objectively this decision is absolutely right — for me and for the community.

But for now it is devastating. More devastating, in some ways, than retiring from work, stopping driving or the hundreds of other losses that have come before.

I will not let it overwhelm me. But right now, in this moment, I am allowing myself to feel it fully.

Some things make perfect sense logically and still break your heart.

This breaks mine.