I No Longer Trust My Own Sense of Time

I feel as though I’m living in an episode of Law & Order. It feels like real time, but it isn’t. Somewhere along the way, I realised that I no longer trust my own sense of time.

That is a strange sentence to write, but I think it is true.

The thought came to me last night while my wife and I were watching Law & Order. In the space of about forty minutes, detectives investigated a crime, witnesses were interviewed, DNA was analysed, suspects were arrested and the case reached court. It all felt as though it was happening in real time.

Of course it wasn’t.

Between one scene and the next there may have been hours, days or even weeks. The writers and editors simply removed them. The story still flowed naturally, so my mind quietly joined everything together and accepted it as one continuous journey.

As I watched, I realised that this is exactly how my own life now feels.

From the inside, life still seems to move one ordinary day at a time. I wake up. I exercise. I write. I spend time with my family. Most days do not feel dramatically different from the day before.

Then I stop and look backwards.

Somehow, I have reached the next scene.

My eyesight is a good example. Not so long ago I could sit down and simply work. Today, every morning starts with cleaning my eyes, putting on my FL-41 glasses and prism lenses, and even then the glare often returns within minutes. I know that this has become my normal.

What I cannot honestly tell you is when it became my normal.

The same is true of so many other parts of my life. I use a wheelchair. I have a live-in carer. I dictate almost everything instead of typing. Turning over in bed has become something that takes effort and planning.

None of those changes happened overnight. Yet somehow, looking back, they almost seem as though they did.

People often ask me how quickly PSP progresses. I used to think that was a simple question.

I no longer do.

Statistics can tell you about thousands of patients. Neurologists can explain the disease far better than I ever could. Both are important. But neither can tell you what it feels like to live inside the passing of time itself.

That is what has changed for me.

From the inside, my life still feels continuous. It still feels like real time. Yet when I pause and look backwards, it is as though whole stretches of time have quietly disappeared, leaving only the evidence that something has changed.

Perhaps that is why I no longer trust my own sense of time.

My next goal is the Jewish New Year, now only six weeks away. I hope, with all my heart, to stand there as chazan. I am doing everything I reasonably can to make that happen.

If you asked me whether six weeks feels like a long time or a short time, I genuinely could not answer. It feels close enough to arrive tomorrow, yet long enough for my life to be completely different by the time it does. I have learnt that neither feeling is particularly reliable.

Perhaps that is what PSP has really altered. Not my understanding of the calendar, but my understanding of time itself.

I still know where I am today.

I still remember where I was.

What I no longer trust is my own understanding of everything that happened in between.