Perhaps “Torture” Wasn’t Clear Enough

Yesterday I wrote about one of the most extraordinary 24-hour periods of my life. It began with immense joy as I had the privilege of leading the Friday night service. It ended in what I can only describe as torture.

Many of the messages I received afterwards focused almost entirely on the joy.

Please don’t misunderstand me. I am deeply grateful for every message, every prayer and every expression of support. They all came from people who care, and I never take that for granted.

But they also taught me something.

Perhaps I wasn’t clear enough.

The joy was real.

The torture was real too.

If anything, the torture is the part I most needed people to understand.

For the latter part of Saturday I was, in effect, almost blind and almost deaf. The light sensitivity became overwhelming, sound became unbearable, fear took over and I was left confronting the reality that this is still the relatively early stage of PSP. The disease is already beginning to bite deeply: first with the nerve pain and now with increasingly severe sensitivity to light and sound.

That experience wasn’t simply uncomfortable.

It was terrifying.

Words matter.

I chose the word “torture” carefully.

I chose it because no gentler word would have been truthful.

This isn’t about seeking sympathy, nor am I trying to create fear or panic. It is about trying to describe the reality of living with a disease that can change dramatically within the space of a single day.

The joy of Friday night does not cancel the terror of Saturday afternoon.

Both happened.

Both are true.

Over the past week I have written about the complexity of hearing the words, “You look great.” I explained that I understand exactly why people say them and that I know they are spoken with love. I also explained why they can sometimes leave me feeling unseen.

I think something similar happened here.

Many people understandably reached for the joyful part of the story because it is easier to celebrate hope than to sit with suffering.

I understand that completely.

I probably would have done the same once.

But if we focus only on the joy, we unintentionally lose sight of the reality that thousands of people living with PSP, and the families and carers who walk beside them, face every single day.

I remain an optimistic person.

I remain a man of faith.

I believe this journey is one that I am travelling with G-d’s help and guidance.

None of that changes the reality of the disease.

Faith does not make pain hurt less.

Hope does not make terror less terrifying.

As I write this, the extreme light sensitivity has eased back to the point where sunglasses are once again just enough to cope. Last night, however, I couldn’t even watch a football match (France). The screen was simply too bright. I have no idea whether that severe episode has passed, whether it will return tomorrow, but it marks another step in the progression of the disease.

That is the nature of PSP.

It ebbs and flows but as the name suggests – it progresses – and with cruel speed.

So please don’t read this as either a disaster or a victory.

Read it simply as the truth.

If there is one thing I hope people take away from my writing, it is this:

Joy deserves to be celebrated.

Pain deserves to be acknowledged.

Neither diminishes the other.

And if I ever use the word “torture,” please believe that I have chosen it because, for me, no other word comes close.