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I woke up this morning feeling excited.
For the first time in a while, I had a new project and a clear plan for it. Overnight, the structure had begun to crystallise in my mind, and I was keen to get started. Before PSP had much chance to make itself known, I was already thinking about chapters, stories, lessons and how nearly thirty years of consulting, leadership and project delivery experience might fit together.
Physically, however, the day had other ideas.
It was pretty dreadful. I was generally slow, powered down multiple times, felt weak throughout the day and fell once, although fortunately my carer managed to slow my descent.
Then there is my new wheelchair.
I have been fitted for a new ‘super-duper’ wheelchair through my HMO, towards which I made a financial contribution. It arrived today, and I found it surprisingly difficult to see. In my eyes, it is enormous—a rather intimidating contraption that looks like a cross between something from a science fiction laboratory and Stephen Hawking’s wheelchair, as I remember it.
It is another piece of equipment to get used to when I am ready, alongside the hospital bed that is due to arrive soon. I know I will adapt, just as I have adapted to other equipment. But that doesn’t make the first encounter any easier. It is another reminder of how quickly PSP is changing my life.
On another day, that might have been the entire story.
But today, the book kept pulling me back.
After a few hours of work and a great deal of dictation, it has started to take shape rather nicely. The structure feels right. I have mapped out the chapters, and they seem to flow logically. What existed only as an idea is becoming something tangible.
I have dictated the introduction and around nine or ten pages in total. For the first time, I can genuinely begin to see the shape of the finished book.
I am happy with the direction. More than that, I am enjoying the process enormously.
The manuscript already contains memories of projects, colleagues, successes, failures and some wonderfully ridiculous episodes from my career. And the writing is unlocking more memories that I hope to use later. As I work through them, I find myself rediscovering lessons buried beneath years of deadlines, meetings and travel.
Most importantly, something is clicking. The book is beginning to feel like a book.
A good friend, who is a tough marker and will undoubtedly be my devil’s advocate, has offered to help. That makes the venture even more exciting.
I also had a lovely visit from a former work colleague today. Reconnecting with someone from that chapter of my life felt especially meaningful while spending so much time writing about it.
And that brings me to what really strikes me about today.
Physically, I have been much weaker. Mentally, I have been much stronger.
It is funny how, when things are going well mentally, PSP sometimes seems determined to nip at me physically. Almost as though it is reluctant to let me enjoy an easy victory.
The symptoms were real. The weakness was real. The fall was real. I also had nerve pain, needed an opioid and couldn’t fall asleep despite trying until late in the day.
But for several hours, none of those things was the most important thing happening in my life.
The book was.
I am increasingly aware that physical and mental wellbeing do not necessarily move together. They ebb and flow, sometimes in completely opposite directions.
There are days when my body is relatively cooperative, but mentally I struggle with frustration, anger or the sheer weight of PSP. And there are days like today, when my body barely cooperates but my mind is engaged, enthusiastic and enjoying itself.
Neither cancels out the other. Both are real.
We often talk about the importance of a positive attitude. I am increasingly convinced that having something positive to focus on can be even more important.
Having something meaningful to do gives me an anchor—something that directs my energy and attention rather than allowing my thoughts to wander towards everything that is going wrong.
Today I did not have to persuade myself to be positive.
I had something I genuinely wanted to do. Something to think about during the early hours of the morning. Something to come back to between freezes and power downs. Something that draws on decades of experience rather than focusing on the growing list of things PSP has taken away.
I am not simply filling time. I am creating something.
Of course, the book will not cure PSP. Tomorrow may be physically worse, mentally harder or both. There will undoubtedly be days when I cannot write a single paragraph, let alone ten pages.
And I have no idea yet whether the finished book will be any good.
But today reminded me of something important.
A meaningful project does not remove life’s difficulties. It changes what occupies your mind.
And sometimes that is enough to change the entire experience of a day.
If I measured today solely by my physical condition, it would have been a disaster. If I measured it by purpose, friendship, enjoyment and progress, it would have been a tremendous success.
Both assessments are true.
Looking back, it really was a day of two halves. The positive edged out the negative. And that made it a very good day.
