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Last week I wrote about something most precious lost.
The article was about my decision to step back from leading services on the High Holy Days, but in truth it was about what that role had come to represent after nearly thirty years. Awe. Responsibility. Connection. Tradition. Purpose. All woven into my identity in ways I never fully understood until I realised they were beginning to slip away. Losing it, and losing the part of myself attached to it, was deeply soul-destroying.
PSP has a habit of doing that.
It forces you to recognise the value of things only once you are no longer able to do them.
And there have been many such losses.
Walking has become too dangerous. Speech less reliable. Smell has disappeared. Eating has changed. Independence has narrowed dramatically. The list grows far faster than the skills were ever acquired in the first place.
Sometimes I feel like an onion shedding layer after layer of itself. Every few days another piece disappears.
Yet if illness has taught me anything, it is that loss is not always the whole story.
Occasionally it is worth asking a different question. Not simply what has been taken away, but what has been given.
And if I am honest, one thing has unquestionably been gained: perspective, and the time to express it.
Not a unique perspective. Not necessarily a wiser one either. Suffering does not automatically confer wisdom. But PSP has given me a vantage point I simply did not possess before, and it has forced me to stop long enough to examine life more carefully, to express thoughts I might otherwise never have articulated, and perhaps most importantly, to confront them honestly myself.
For most of my adult life my focus was firmly fixed on the next task, the next client, the next deadline, the next flight, the next obligation. Together with my wife, I raised a wonderful family and built a successful career, and I remain deeply grateful for both. But much of my life was spent looking only a few feet ahead.
Now, largely because I have been forced to slow down, I find myself casting my intellectual gaze far further into the distance.
I notice how fragile life really is beneath the illusion of permanence we quietly construct around ourselves. Plans we imagine are fixed. Timetables we assume will hold. Futures we casually treat as guaranteed.
Alongside that, I notice how much beauty passes through our lives almost unseen. Ordinary moments. Familiar conversations. Shared meals. Small acts of kindness. Things that barely register while we are rushing through them, yet later reveal themselves to have been the substance of life itself.
I also notice how much of modern life is built around noise rather than meaning. Endless rushing. Endless reacting. Endless accumulation. As though activity itself has become a substitute for purpose.
I spent years flying around the world collecting frequent flyer miles, buying gifts in duty-free shops for my wife and children, subconsciously believing this somehow compensated for absence. At the time I genuinely thought I was doing the right thing, and in many ways I was. Providing for your family matters. Responsibility matters. Hard work matters.
But illness changes the weighting of things.
When physical abilities begin disappearing one by one, you start to see more clearly what remains after the superficial layers have been stripped away.
Family remains. Love remains. Friendship remains. Faith remains. Humour remains too, surprisingly enough.
Most importantly, meaning remains. In some ways, for me at least, it has expanded.
Ironically, as my physical world has become smaller, my intellectual and creative world has expanded dramatically. In the three months since I started using dictation software, I have dictated more than 226,000 words, the equivalent of several novels in length. That came after already publishing four books. Ideas now arrive faster than I can process them. I find myself thinking deeply about morality, society, faith, politics, suffering, resilience and human nature in ways I simply never had the time, or perhaps the stillness, to consider before.
I would never romanticise this illness. No sane person would choose a terminal neurological condition in exchange for perspective. The price is far too high.
But perspective itself is precious.
And perhaps the challenge for healthy people is to gain some of that perspective before life forcibly imposes it upon them. To stop occasionally and ask whether busyness has been confused with importance. Whether achievement has been confused with meaning. Whether they are truly present for the people they love.
For much of my life my gaze was fixed on the immediate path ahead. Now I feel more like a periscope rising above the surface, finally able to see the wider landscape properly. It is a view observed against a ticking clock, and I am acutely aware that those closest to me, my carers, my family, carry burdens that perspective alone cannot lighten. That awareness never leaves me.
And despite everything I have lost, that perspective may ultimately be something precious gained.
The skill is worth developing while you still have the luxury of choice, and not only once life leaves you with no alternative.
