My Genre? Speed

I have been thinking about my writing style. It is autobiographical, obviously. At times it is humorous, at times melancholy, sometimes upbeat, and sometimes all of those at once. But underneath the shifting moods, tone changes, and subject matter, what defines it is not emotion or reflection. It is speed. The speed at which life is now moving, the speed at which things are changing, and the speed at which I feel compelled to capture them before they are overtaken by whatever comes next.

Retirement, I always assumed, was supposed to be slow and easy. Boredom was part of the deal. Puzzles, woodwork, reading, leisurely walks by the sea, long coffees going nowhere in particular. That is not my retirement. And I suspect it is not the retirement of anyone living with PSP, or with any serious illness that moves at its own relentless pace.

I used to be extraordinarily busy. A full calendar. A secretary chasing the moving parts of my day. No time for lunch. Often at least one long‑haul flight a week. And yet, for all that motion, what did I actually have to write about? I had plenty to produce: emails, reports, documents, spreadsheets. But substance? Not much. I was a career corporate person helping very clever and, for the most part, wonderful people execute business transactions. I loved it, worked hard, added value, and it gave me the ability to retire modestly but comfortably at fifty, which is no small achievement anywhere, let alone in a country I moved to nineteen years ago after taking a substantial pay cut, where the cost of living has proved just as high, and often higher. But write about? I never stopped long enough to think about it.

PSP is something else entirely.

It moves at a speed I researched but never quite believed. And the subject matter is everything: what this disease is doing to my body, my soul, and the people around me. It carries every possible emotion simultaneously: sadness, laughter, pain, fear, hope, love, all on the same rollercoaster, all at once.

Take this week and next. My calendar is essentially empty. Quiet on paper. But in practice: Botox injections in my eyelids to reduce involuntary closing that leaves me blind; a rush to buy virtually every available massage product for legs whose muscles are atrophying and causing real pain; what look like seizures; an MRI as part of the workup following a suspected TIA. And with almost every day bringing a new symptom front and centre, usually one I did not see coming, I am withdrawing from the world to protect my body, seeing fewer people, no longer going to synagogue.

I cancelled a night away with my wife because I did not feel I could manage it after an MRI. I hope to rebook it. I am celebrating my birthday with all my family, which is exactly where I want to be. Close friends visiting from abroad are coming to see me, and I cannot wait, even though I will not pretend I am not fearful of how my brain will respond to the exertion both events will bring.

There is so much happening, and I am acutely aware that if I do not get it down immediately, the experience will be swallowed by the next one. Worse, I may simply no longer be able to chart it at all. I feel it for increasing parts of every day: the stiffness, the lowering of my power charge, the walls closing in, and at certain hours my vision dimming and my speech beginning to go.

This is happening despite my natural energy; despite every reasonable precaution against falls and choking; despite medical advice, daily exercise, and at least three sessions a week of physiotherapy, acupuncture, or medical massage. It is happening anyway.

I am also interacting with a whole new world of people online: carers, patients, loved ones, and out‑of‑touch old friends finding their way back. This really helps me.

When all is said and done, this is the Titanic. The ship is sinking, and it is sinking fast. And like the band playing on in the famous scene, I am trying to extract the maximum from life in the process. Not through travel, because I cannot. Not through art, culture, or crowds, because the fear of what my body might do in those settings is too great. But through writing my experience, so that others, patients and caregivers alike, might gain an honest perspective on what it is actually like to live through this. Through being present with my family, while asking them to live their lives as normally as possible. And through writing on other subjects that matter to me, especially Faith, which has become far more important than it was before.

I hope I am overstating the danger I am in. I hope that in ten years’ time I am a happily retired family man and that I have been making a meal out of things. But I think we all know, hand on heart, that this is simply not the case. I have faith and trust in G‑d, but the path seems pretty locked and loaded. Of course a miracle may happen. But I have never not studied for a test because I thought the course might be cancelled, nor failed to deliver a report due to a client because it might somehow go unnoticed. You work with the cards you are dealt, and mine are the ones in front of me. G‑d works through natural processes in the main, and mine is a process that thousands have endured before me, and sadly will endure after me.

As I turn 51, thinking back on the enormous deal I made of turning 50 and flying to Japan three days later to visit my son, the scale of change is almost incomprehensible. Life has pivoted 180 degrees. Multiple times. Wheelchair. Carer. Full ground‑floor home renovation. Botox injections in my eyelids. Each time, we adapt. And we move on. I am not even beginning to think about turning 52, either positively or negatively, because a focus on the future is simply not helpful.

I cannot take my foot off the pedal because the disease will not take its foot off mine. That makes me hyperactive and, yes, obsessive about recording this journey. If that comes across as too much, too frequent, too relentless, I understand. It remains your choice whether to read it or not. There will come a point, probably suddenly, where the updates stop.

But my position on the fundamentals has not shifted once: faith; hope that fear continues to be worse than reality; family; purpose; and staying positive, not as a performance, but as a daily, deliberate act.

That is the speed I am living at.