WOW – What a privileged position I am in

Let me be clear from the start: I have not gone stark raving bonkers. I am not going for one second to say how happy I am to have PSP, or to be watching my own demise in real time. But, and it is a significant but, the very first thought that came to me this morning was the one above: “Wow. What a privileged position I am in.”

Free of the day-to-day duties so many people carry, not dependent on anyone financially, thanks to a great deal of work over many years, and most importantly still possessing the cognitive function and the English language to write, I am one of a very small number of people able to chart a stage of life that rarely gets charted. The terminal illness phase.

It is not a topic for everyone. It is pretty niche and will never find its way to the front shelf. But it matters to far more people than I could ever have imagined, not just to me and my immediate family and friends, but more broadly to patients, caregivers, families, and hopefully to those who look after them: medical professionals of many different kinds.

And then there is the PSP community itself. People who live with this terrible disease day in, day out, whether as patients enduring it or as caregivers carrying those who cannot carry themselves. To be welcomed into that community, to be able to speak with them and for them, is a rare privilege that I do not take lightly.

I am not alone in this. There are TV documentaries, books and blogs. But I am one of them, and I take that seriously.

I think this qualifies as meaning and purpose. And whilst I am not looking forward to the possible cliff edge I am heading towards, or potentially another plateau or ten, I have to be at least grateful for having a true purpose in life that matters to more than just myself.

That purpose demands honesty. Every word I write may count for something, which means I can only be honest with myself and honest about the truth. And the honest truth, right now, is this: I am sitting here unable to walk, increasingly dependent on a carer around the clock, in some pain, and frustrated by all the things I cannot do that most people over the age of two manage without thinking.

And yet. I am truly grateful for having meaning and the ability to communicate. I am grateful for the few beautiful things that are still happening: watching my children grow, spending time with my wife, and just yesterday sitting in the garden soaking in the sun, albeit from the shade, completely unbothered by the project I struggle to resource, the road trip I cannot take, the travel I will not be doing next week.

This morning, and I don’t know how long it will last, I can see beyond the apathy of recent days. I am glad to write this. I wrote it quickly. (Writing it, of course, means using dictation software for the most part.)

However long this clarity lasts, I am simply grateful, and I hope I do my job properly of communicating what it feels like to be a patient in this situation. There will be moments, even for those who cannot write, where a sense of gratitude breaks through, gratitude to those who care for them, and to Him above for putting His trust in me for this slightly out of the ordinary task. Just as I moan and complain and describe the very real downsides of a disease as brutal as PSP, occasionally the fog lifts and I can see the positives that at least soften some of what life is now.

For good or bad, this is my path. I tread it with a degree of reverence and commitment to the cause, for as long as I possibly can.

I hope everyone has a good week. For those struggling, as I struggle, I hope you find moments of brief interlude where you can see the goodness in things, and the humour too.

Today there is a tennis final between Sinner and Alcaraz, which should keep me entertained, alongside a scheduled echocardiogram for the suspected TIA, a mini-stroke from a few weeks ago that has repeated itself at least once. So there is no shortage of things to keep me occupied, or of moments that are absurd enough to be almost funny.

This is reality, not toxic positivity. Honest, clear-eyed, and on this particular morning, quietly grateful. From someone on a journey he never wanted, doing his best to walk it well.