Two Wrongs and One Right

Three months ago, I was asked to write an article for a UK PSP magazine about living with PSP. I hesitated more than once. The idea of committing my thoughts to paper for something that would not be published until months later, while also submitting a draft two months before the deadline, felt almost impossible. I did not know what tomorrow would look like, let alone how I would feel by the time the article appeared. At first, I said no. Eventually, I came to my senses and agreed.

I still do not know exactly when the article will be released, but the quarterly edition is due out soon. I am genuinely, very genuinely, pleased to say that I am still largely the same person I was when I was first invited to write it. Despite the onset and progression of PSP, including moving downstairs and transitioning from walker to wheelchair, the core of who I am remains intact. Since then, I have also published three books.

Yes, many things have changed. My general health has shifted, and new challenges appear without invitation. But I still wake up with the same attitude, the same way of looking at life, the same approach to each day, and the same occasional frustrations. In the ways that truly matter, I am still me.

I am not someone who likes to tempt fate, but if you had told me back in October that I would feel as I do now, I would have accepted it wholeheartedly. In fact, I would have dreamed of it. And so, on that first count, I was wrong. I feared the unknown, yet here I am, still standing, still myself. I have always said all along that the fear is worse than the actuality, and three months on I still maintain that fact.

Last night, after posting my update, a few people reached out to tell me that their loved ones were diagnosed around the same time as I was and have been on a similar journey.

I am not glad that anyone else received this diagnosis at my age. If anything, I would prefer to be the only one. But I take comfort in knowing that I am not alone on this path. Others are navigating the same terrain alongside me.

So yes, on that second count, I was wrong as well. I am not as unique as I thought. And strangely, that brings a sense of connection I did not realise I needed.

And now, the one thing I did get right.

As predicted, in football or as sone say soccer – our local nemisis Arsenal defeated my team Tottenham 4–1, and several members of my family are feeling quite pleased with themselves. I had already braced for impact, so I could not care less, or perhaps just a little. I saw the first goal go in and then went to bed. I only looked at the final score just now, sparing myself the harrowing experience of watching a match that was only ever going to go one way.