Right now – I’m in a Good Place

One of the dangers of writing positively is that you inevitably set yourself up for a fall.

I know all the clichés. Feelings change. Circumstances change. Good days become bad days and bad days become good days. If there is one thing that living with PSP has taught me, it is that certainty is usually temporary. Any statement about how I feel today comes with the full knowledge that I may feel completely differently tomorrow, or even later this afternoon.

And yet, despite knowing all of that, I feel compelled to write down something that is true for me at this moment.

I’m in a good place.

I could quite easily write a different article. In fact, it would probably be easier. I could list the negatives. I could dwell on the pain, the frustrations, the practical limitations, the fears for the future and the endless uncertainties that PSP brings with it. None of those things would be invented. All of them are real, and all of them deserve to be acknowledged.

But that isn’t what I’m thinking about this morning.

As I sit here reflecting on life at a quarter to six in the morning, the honest truth is that I feel content. Not because everything is perfect, and certainly not because PSP has somehow become less serious. It hasn’t. I can feel it every day. I can hear it in my voice as I dictate these words. I can feel it in my body. I can feel the many ways in which it shapes my life and the life of my family.

At the same time, I should add an important qualification. Nothing in this article is intended to dismiss or minimise the extraordinary struggles experienced by other people living with PSP, or by the families who support them. Through my own journey and through conversations with many people affected by the condition, I know how cruel, relentless and frightening this disease can be. I know there are people facing challenges far greater than the ones I happen to be carrying this morning.

This isn’t an attempt to rewrite that reality.

It is simply an attempt to describe my own reality at this particular moment in time. Despite understanding the road ahead, despite the fear, despite the uncertainty and despite all the complications that PSP brings, I find myself in a good place.

More than that, I feel grateful. I feel fortunate. And, perhaps most surprisingly of all, I feel happy.

It sounds almost ridiculous when written down. How can somebody be happy while living with a progressive neurological condition, swallowing 44 pills a day, carrying pain, anxiety and uncertainty as daily companions? On paper, it doesn’t make much sense.

Yet happiness was never really about having perfect circumstances. If it were, very few people would ever experience it. Happiness is often something quieter than that. It is an appreciation of what remains rather than an obsession with what has been lost.

This morning my focus is not on what PSP has taken away. My focus is on what still exists. I still have purpose. I still have laughter. I still have people I love and who love me. I still have opportunities to contribute, to write, to encourage others and, hopefully, to be a good example to my children.

My prayer is not for outright miracles. I have never felt comfortable demanding those. I’ve had a good life and, despite everything, I continue to have one. Instead, my prayer is that I can hold on to this mindset for as long as possible. I hope I retain my sense of humour when the darker days arrive. I hope I keep my perspective when the rollercoaster dips. I hope that when the inevitable Jekyll-and-Hyde moments occur, as they always do, the overall direction of travel remains positive.

I think of it as trying to keep moving in the right direction. Not perfection. Not constant happiness. Not pretending that difficult things are easy. Simply trying to live a good and worthwhile life, whatever physical circumstances I find myself in.

Tomorrow I may feel differently. Experience suggests that I almost certainly will. It may even happen by 11 am this morning. But that doesn’t make today’s feelings any less real, and it doesn’t make this moment any less true.

So, for the record, at a quarter to six in the morning, with PSP still present, with uncertainty still present, and with all the challenges that come with both, I want to record a simple truth.

Right now, I’m in a good place.

And, as we say, bli ayin hara — without tempting the evil eye.