Hope, Spontaneity and Anxiety Coexist. Pity Does Not.

Friday afternoon gives me a chance to pause, reflect on the week and look back over the posts I have published. Individually, they cover very different subjects. Read together, certain themes emerge.

This week, they are hope, spontaneity and anxiety. All three coexist in my life. Pity does not.

Ten years ago, if I had passed someone like me in the street, sitting in a wheelchair with a carer beside him, I would probably have felt sorry for him.

I would have seen everything he could no longer do. I would not have seen what was actually happening inside his life.

On the surface, the evidence for pity is not difficult to find. On a whim, I counted my regular medication. Excluding occasional painkillers such as ibuprofen, I discovered that I take more than 40 tablets every day.

Not one treats PSP itself. Some manage movement. Some manage pain. Several help with the significant anxiety that has become part of my life.

That anxiety is driven largely by uncertainty. Whenever a new symptom appears, the questions begin. Is this PSP? Is it temporary? Is it permanent? Is it something completely different? Is this the beginning of the end?

More than 40 tablets a day, a wheelchair, a live-in carer and an incurable disease create a fairly compelling picture from the outside.

But it is not the whole picture.

This week, my regular airline awarded me lifetime Gold membership, although apparently my lifetime expires when I am 101.

Ten years ago, many of the people who might now pity me would have done almost anything for lifetime status and not having to make targets every year to retain their benefits. I might have done too.

I earned it by spending an enormous amount of my thirties and forties travelling, much of that time away from my family. The irony is that, by the time I received the award, I was effectively unable to fly.

It is a reminder of everywhere I travelled, but also of the important things I sometimes forgot while focusing on my career.

Still, the status has already proved useful for correcting dumb mistakes, such as booking my son and his girlfriend onto the wrong flights.

This week also saw that being unable to fly has not completely removed the travel agent in me.

In my traditionally spontaneous fashion, I arranged a flight to Cyprus for my wife and two daughters to surprise my sister, brother, nieces and cousins, who were holidaying there.

I could not join them, but that did not stop me from arranging it. I watched the videos of the surprise and took enormous pleasure from living the trip vicariously.

The old Ben arranged spontaneous trips and jumped onto the plane. The current Ben still arranges them. He just sends other people.

PSP has changed how I participate in life, but it has not removed my ability to create experiences, make people happy or cause minor chaos with airline bookings.

This week also brought something rare in the world of PSP: an improvement.

I had my third round of Botox injections around my eyes. Ten injections in and around the eyelids are not especially pleasant, but the result has been worth it.

My eyes are more open, appear less narrow and close involuntarily far less often. Together with my new shade, Botox has brought a genuine improvement to my vision.

It does not cure PSP or slow it down. But it makes one difficult symptom more manageable. When living with an incurable progressive disease, a tool does not have to be a cure to matter.

I have also moved from 52% to 63% of the way towards my goal of leading the Rosh Hashanah prayers.

That is not simply another 11% of time survived. I have been learning, practising and preparing. I even taught myself the basics of graphic design to produce an infographic explaining one of the central prayers.

The time between 52% and 63% has not been empty. It has been full of purpose.

I have also mentored people, welcomed good friends, researched the psychology of emojis and played plenty of chess, most of which I lost.

I genuinely have not had a minute to watch television, except Netflix, which apparently does not count.

The week ended in the best possible place.

I received an anonymous message from the daughter of a man who had PSP. She told me that her father retained his cognitive function until the end and continued to communicate, even when reduced to one-word answers.

It is a sample size of one. It proves nothing scientifically. But it spoke directly to one of my greatest fears and gave me hope.

Hope and anxiety can coexist.

So can physical decline and genuine improvement.

I can be unable to travel while still arranging a spontaneous family trip. I can take more than 40 tablets a day while continuing to learn, write and mentor. I can be frightened of what comes next while working determinedly towards a goal.

My life is difficult, but it is not empty. It is increasingly restricted, but it is not passive.

Hope, spontaneity and anxiety coexist in my life.

Pity does not.