Intermission

The curtain is coming down for a little while. Not on the story, just on this chapter.

The last couple of weeks have been intense, to say the least. PSP has ratcheted up, as have the effects of some of my medications, although I am gradually getting those under better control. I am tired.

With the World Cup starting tonight and Wimbledon just around the corner, I am planning to take a break from posting for a while.

This is absolutely not a final decision. Knowing me, I may find myself writing again tomorrow morning. But right now, I feel a little short of headspace. Over the past few years I have covered so much ground that I am not sure I have much new to say at this moment, other than to communicate when there is something important to share.

Recently, several people have asked me what would happen to the blog if and when I am no longer able to write it.

It is not a question I particularly enjoy thinking about, but it is a fair one.

This afternoon, I made a decision.

I have taken the entire blog and submitted it to Amazon as a paperback book. I have reviewed the hundreds of posts and carried out a basic proofreading that is far from perfect, but perfection was never the point.

The point was preservation.

These blogs have documented far more than a disease. They have recorded how I have thought, adapted, struggled, learned, laughed and occasionally complained my way through the last few years. Whatever happens in the future, that record now exists. PSP may one day take away my ability to write, but it cannot take away the words that have already been written.

If all goes well, the book should be available in the coming days, unless Amazon decides otherwise.

The timing feels right. Last night’s post, Grateful, feels like a natural place to pause. It captures how I feel about things at the moment and, if I were ever forced to stop writing, I would be content for those thoughts to serve as a closing chapter.

Please G-d, that day is still a long way off.

I fully expect—and very much hope—to continue writing for many years to come. If that happens, the book can simply be updated and expanded over time.

The current edition runs to around 640 pages and contains only the English-language posts. I do not expect many people to buy it, and that is perfectly fine. It exists primarily for posterity. If it proves useful as a resource for people living with PSP, their families, carers, researchers, or anyone interested in understanding this disease a little better, then so much the better.

For now, I intend to spend some time watching the World Cup and Wimbledon, attempting to relax, and perhaps giving my brain a chance to recharge. Although, knowing me, I will probably end up writing about something else before too long.

As I said, the final post in this book edition is Grateful.

That was not accidental.

I am deeply grateful to everyone who has supported me along the way—with comments, messages, encouragement, kindness, prayers and love. What started as a personal outlet has become something far more meaningful than I ever imagined.

PSP remains a terrible disease.

Yet the experience of sharing this journey with all of you has been immeasurably more positive than I ever thought possible.

Sending my love to all.