It Is Often the Little Things

It is not always the big things that hurt the most. Sometimes it is the little things. The seemingly unimportant, everyday things that you barely noticed until they were no longer part of your life.

And today, I have really felt their absence. Let me be clear from the outset: I am not blaming anyone.

My daughter has parents’ evening tonight. I am not going. There was no discussion or difficult decision. It was simply assumed, quite reasonably, that I wouldn’t be there.

Until recently, I was actively involved in my children’s education. I still am when I can be, and yesterday I got enormous pleasure from my daughter sitting and learning with me. But tonight I won’t be there.

My son had his first day at university today. He is wonderfully resourceful and independent, which makes me proud. But it feels strange that such an important milestone has arrived with virtually no involvement from me.

Tomorrow, my wife, her parents, and the wider family are going out for lunch. I was invited, but everyone, including me, assumed I wouldn’t go. The journey, the noise, and the effort are simply not worth the consequences, particularly with my ongoing stomach problems. I feel much safer at home.

Nobody is excluding me. PSP is making these decisions for me.

Over the last few days, I have been helping friends navigate difficult employment situations. I enjoy using my experience and hopefully making a difference, and I am grateful they value my advice. But while discussing their meetings, challenges, and decisions, I suddenly looked at my own calendar.

Empty.

Actually, that’s unfair. I have an appointment with my therapist.

At 51, I have apparently become a man of leisure. Unfortunately, nobody told PSP that leisure is supposed to be enjoyable.

I find myself living a little vicariously through my friends. I miss having responsibilities, deadlines, somewhere to be, and people expecting something from me. Even the feeling of being in a rush.

There are now so few expectations of me, and understandably so.

I cannot simply fill my diary. My energy is severely limited, and when I push too hard, my body can effectively shut down. I remain conscious but become rigid, immobile, and unable to communicate until the episode passes. It has happened twice today alone.

I sleep during parts of the morning and evening. The rest of the day is often spent managing symptoms, recovering, or trying to avoid triggering another episode.

Meanwhile, everyone around me is busy living their lives.

And that is exactly what I want. My children should be building their futures, my wife should be enjoying time with her family, and my friends should be pursuing their careers. I have worked hard to ensure that PSP doesn’t take over their lives simply because it has taken over mine.

But that doesn’t mean I don’t miss being part of those ordinary moments.

This isn’t intended to be a whinge, although perhaps it sounds like one. I have a wonderful family, great friends, and plenty to be grateful for. I still write, advise, contribute, and occasionally make people laugh.

But contribution is not quite the same as participation.

None of today’s disappointments is a catastrophe. No major medical decision, no dramatic deterioration, no crisis. Just an ordinary day in which I have been reminded how much my life has changed.

PSP doesn’t only take away the big things. Sometimes it is the accumulation of little things that hurts the most.

I understand why this transition can lead to depression. I am fighting against that possibility, partly through writing, finding purpose, and keeping myself engaged. But it is hard.

And perhaps the saddest illustration of today’s excitement? I am currently watching the snooker final on television.

At 51, I really hadn’t imagined this would be the highlight of my Sunday evening.