Windows of Time

My days are no longer measured in hours.

I have learned that they are measured in windows.

A window opens after I have slept or rested. For a while, I feel more like myself. I have energy. My mind is clearer. I can think, talk, enjoy people and do things.

Then, without much warning, the window closes.

Sometimes I describe it as “powering down”. Other times it feels like fog rolling in. Which one happens seems almost random. Either way, I know it is time to stop, recharge and wait for the next opportunity.

Not so long ago I could comfortably work sixteen-hour days, lead major projects and simply keep going.

Now my Garmin watch tells a very different story. This week my Body Battery reached 5 before midday. Garmin users will know how extraordinary that is because the scale goes no lower. Most people never come close to a score that low, even at the end of an exhausting day.

I think these windows are becoming shorter, although sleep still makes a remarkable difference. More importantly, I am learning how to use them.

Today I had four.

The first came at 3am, when I wrote what turned out to be a very therapeutic blog. Afterwards I was completely spent, and dozed off watching a Netflix documentary about climbing the world’s fourteen highest peaks. Safe to say that one has now come off my bucket list (as if it was ever on it).

The second was over coffee with a neighbour. We had a deep philosophical and faith discussion. It was thoughtful, honest and deeply enjoyable. We spoke almost totally in Hebrew, sprinkled with English, which takes real effort for me. By the end I was exhausted. I asked to stop because I was running out of juice. We agreed to continue the conversation another day.

The third was with my mum and my four-year-old nephew. I loved every minute of it, although halfway through the window closed and I had to disappear to my bedroom for a short sleep. Before that, however, we made a paper aeroplane together, something I had not done for years. Its maiden flight ended rather abruptly when Buddy intercepted it, ran off triumphantly and transformed it into something only vaguely resembling a paper aeroplane.

The fourth window was my favourite.

Yesterday I noticed that my youngest daughter never wears a watch. I suggested buying her one. Being me, I wanted to order it immediately after Shabbat. Sensibly, my wife and daughter persuaded me to wait until today and visit a proper watch shop together.

Waiting just one day felt surprisingly difficult. PSP has changed my relationship with time. Tomorrow no longer feels quite as certain as it once did.

This afternoon I woke from a short rest and immediately recognised the feeling.

The window had opened.

I announced, perhaps a little too enthusiastically and forcefully, that we should leave immediately. I knew that if we waited, the opportunity might disappear.

So there we were. A quiet little watch shop. A teenage daughter. A completely unembarrassing mother.

And me.

An electric wheelchair because it was only a short distance from the car (and it is my live in carer’s day off so we can’t lift the manual wheelchair into the car). A baseball cap. Sunglasses indoors because of the light sensitivity. In other words, exactly the sort of father every teenage girl dreams of taking shopping.

Within about a minute I managed to drive over my wife’s sandal and snap it clean in two.

Thankfully it was the sandal and not her foot.

My wife was considerably less amused than I was. The harder I tried to stop laughing, the worse it became, which probably made the whole episode even more embarrassing.

Whether you blame PSP or simply blame me is entirely your choice. Uncontrolled laughter is actually documented widely as a symptom.

Fortunately, my daughter found the watch she wanted. My wife will get a new pair of sandals. I apologised profusely and, before anyone asks, she gave me permission to write this story.

I came home smiling.

Not because I bought a watch.

Because, for less than an hour, I stopped being the father who is mostly stuck at home. I was able to take my daughter shopping, spoil her a little and see her smile.

Those ordinary moments are becoming extraordinary.

That is the gift these windows still give me.

They are short. They are unpredictable. They have to be used wisely. Pack too much into one window, mentally or physically, and it closes even sooner. But while one is open, life still happens.

As I write this, I can already feel today’s final window beginning to close. Perhaps the excitement has kept it open a little longer than usual, but I am tired now. I wanted to capture the thought before it disappeared.

Today was a good day.

Four windows.

Four opportunities to live.

Three wonderful memories.

One broken sandal.

And proof that, despite everything PSP has taken from me, I can still embarrass my family.

Some things, thankfully, never change.