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I almost deleted the blog I published earlier today. Not because it was inaccurate, and not because I had changed my mind about anything I had written. I wanted to delete it because I found it deeply embarrassing.
The blog was about spending the afternoon watching The Rock with my live-in carer. Two enjoyable hours, a film I have seen many times before, and an afternoon I genuinely enjoyed. I wrote about it enthusiastically and pressed Publish without giving it a second thought.
Then, later that night, lying awake and unable to sleep, a very uncomfortable thought occurred to me.
What have I done?
Eighteen months ago, I was a partner in one of the world’s largest professional services firms. My life revolved around international travel, board meetings, strategy discussions and decisions that affected thousands of people. Today, I wrote a blog about watching a film.
My immediate reaction was harsh and entirely instinctive. I looked at the contrast between those two realities and thought, this is pathetic. For a few moments, I even considered taking the post down before too many people read it.
The more I thought about it, however, the more I realised I was looking at the blog completely the wrong way.
In fact, that short post may be the clearest explanation of PSP that I have ever written.
People often ask what this disease has taken from me. The obvious answers come easily enough. Mobility. Independence. Driving. Work. Travel. Energy. Privacy. Confidence about the future. All of those things matter, and all of them have been affected.
Yet none of them fully capture the distance between the life I had and the life I live now.
Strangely, a blog about The Rock does.
Not because there is anything remarkable about watching a film. Millions of people spend an evening in front of a screen and think nothing of it. The important thing was not the film itself. It was the fact that I genuinely felt those two hours were worth writing about. Not as a joke. Not ironically. Not as an attempt to force positivity into a difficult situation. I was sincerely pleased that I had spent an enjoyable afternoon watching my favourite action film.
That is what struck me.
The version of me from eighteen months ago would not have recognised that feeling. He would not have understood why an ordinary afternoon watching a film would seem noteworthy enough to write about. The fact that it now does explains more about the reality of living with PSP than any description of symptoms ever could.
The true gap between my old life and my new one is not measured in wheelchairs, grab rails or medical appointments. It is measured in what now counts as a good day.
I think that is one of the hardest parts of a progressive illness to understand. At first, you focus on the practical losses because they are visible and easy to describe. Over time, however, something deeper changes. The scale by which you judge a day changes. The things that bring satisfaction become smaller, quieter and more ordinary.
The strange thing is that I genuinely enjoyed those two hours. I do not regret watching the film. For a brief period tonight, I regretted writing about it because it forced me to confront what that enjoyment represented.
Now, however, I do not regret the blog either.
Because that ordinary afternoon explained something that I have been struggling to put into words for months. Disease does not simply change what you can do. Eventually, it changes what feels important.
And sometimes the smallest stories reveal the biggest truths.
This, I think, is one of them.
