PSP Almost Stole a Perfect Day

One of the greatest benefits of writing this blog is that it forces me to put my life into proportion. This morning, I really needed that.

I woke up fixated on two things. The first was a continuing, debilitating symptom of Progressive Supranuclear Palsy (PSP), one that brings discomfort, pain and, at times, absolute agony. The second was an abusive email responding to yesterday’s post. Stripped of its language (yes, the F-word made an appearance), it essentially asked what on earth I thought I was writing about.

I was angry, frustrated, worried and in pain. Those feelings filled every corner of my thinking.

Then I started writing.

And slowly, I remembered something the pain and anger had pushed aside. Yesterday was a great day.

Two moments, both involving my children, made it so.

The first was meeting the parents of my son’s girlfriend.

A few months ago, my eldest daughter got married, one of the proudest days of my life. Yesterday brought another family milestone, quieter but no less special.

I won’t share too many personal details, but I will say that we met truly lovely people: warm, kind, thoughtful and welcoming.

We shared coffee, conversation and something rather unusual: books. I gave them some of the ones I’ve written. They showed us books of enormous importance to their family’s history. You don’t hand those to just anyone, and the trust in that gesture touched me deeply.

I came away with real warmth towards them and a deep happiness at seeing my son surrounded by such good people.

The second moment might seem minor to some. Not to me.

A couple of weeks ago, I wrote about spending a few hours learning with my younger daughter as she prepared for a school test.

Yesterday, she got her result.

She aced it.

I was proud, of course, but not only of the mark. I was proud of what we had shared: the preparation, the learning, the fun of it. She did the hard work. I simply had the privilege of sitting beside her for part of the journey.

I have three wonderful children. Watching them grow into the people they are becoming is the greatest joy of my life.

Of course, I worry about the future. I worry about milestones I might miss, celebrations I might not attend and time I might not have with them. Those fears are real.

So is the temptation to let today’s pain and tomorrow’s worries crowd out the blessings right in front of me.

I write honestly here about the pain, disability, frustration and fear that come with this dreadful disease. But writing also makes me stop and take stock. It reminds me that PSP is a huge part of my life, but it is not the whole of it.

Sometimes it takes a while for the sun to break through. This morning, writing helped it happen.

I know positive thinking cannot remove pain, restore lost abilities or make PSP disappear. For many patients, finding positives at all can be extraordinarily hard. But for me, deliberately remembering the good makes an enormous difference. It doesn’t erase the bad. It puts it in its place.

The email is no less offensive than it was a few hours ago. The pain hasn’t magically gone either.

But neither gets to define the day.

The pain was real. The anger was real. But so was the joy.

And the joy deserves to win.