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This morning, in the middle of the night, I sat with my son to watch England play Mexico in the World Cup. It was unforgettable.
For 101 minutes, I was completely absorbed. Every pass, every chance, every save. For those 101 minutes, PSP took a back seat. We were simply two England supporters sharing the tension, the celebrations and the hope that only football can bring.
As the final whistle blew, I found myself thinking about a comment a caregiver had shared during one of our PSP support groups. I asked her if I could use her words because they may be the truest I have heard since my diagnosis.
“A good minute is gone as quickly as a bad minute. And they are equally as important.”
The more I reflected on those words, the more I realised they perfectly describe life with Progressive Supranuclear Palsy.
Twenty years ago, I was privileged to travel to Germany for the 2006 World Cup. At the time, I simply thought I was enjoying a wonderful football tournament.
Looking back, I realise I was collecting moments.
This morning, I knew I was doing exactly the same thing. The difference was that this time I recognised the moments while I was living them. I found myself grateful, not simply for 101 minutes of football, but for 101 moments of life.
The difference is that PSP has changed the way I see those moments.
Before PSP, I measured life in days, weeks, months and years. There was always another meeting to prepare for, another deadline to meet, another holiday to plan.
Now I measure life rather differently.
PSP has taught me that life changes from minute to minute. One moment I can be enjoying a conversation, playing chess with a friend or watching a football match. The next, my eyes refuse to stay open, exhaustion takes over, pain arrives uninvited or swallowing suddenly becomes difficult.
Just as suddenly, a difficult spell can lift.
Life is lived one minute at a time.
When a good minute arrives, you do not postpone enjoying it. You laugh. You treasure the conversation. You enjoy the sunshine, well before photophobia! You savour the cup of coffee. You watch football with your son in the middle of the night because, for that moment, nothing else matters.
And when the bad minute comes, you try to remember that it too will pass.
I am not interested in pretending the bad minutes are secretly fine. They are not. They can be frightening, painful and exhausting, and no amount of gratitude for the good ones changes that.
What the caregiver’s words gave me was not comfort. They gave me a different way of looking at life. Almost a simple piece of arithmetic. A good minute counts exactly as much as a bad one. Neither cancels the other out.
Those 101 minutes have gone.
But the 101 moments remain.
Just as she said they would.
There will be other football matches. There may even be other World Cups. But there will never again be this particular match, this particular night, this particular stage of my life. Like every good moment, it has passed. What remains is the privilege of having lived it.
Perhaps that is what PSP has taught me more than anything else.
Life is not measured in years, or months, or even days.
It is measured in moments.
For me, faith reminds me that every one of those moments is a gift. I do not always understand them. I certainly do not always enjoy them. But I try not to waste the good ones when they arrive.
Last night, I was privileged to be given another 101 of them.
