I Genuinely Have No Idea How This Will Play Out

I am kidding myself, right? I have PSP. It will almost certainly shorten my life, and the road towards its end may be very nasty indeed.

How nasty? Someone I had been supporting, after they were given a possible diagnosis of PSP, had an unexpected medical emergency last week. Further investigation, including an MRI (a scan I have also had), revealed that they did not have PSP after all. They had a brain tumour.

Before anyone knew whether it was benign, they wrote to me saying that they had not had time to take it in, but there was clearly relief in their words at the thought of no longer having an untreatable terminal illness. I was also relieved for them, and when I heard that it does indeed appear to be benign, I was genuinely happy for them because, with a tumour, there is hope and the possibility of a future.

Sit with that for a moment. PSP is so horrible that both of us felt, honestly and in that moment, that a brain tumour might be the better option. Neither of us knew whether it was benign or what would happen next. I am not suggesting that one illness can simply be compared with another, but our reaction surely says something about the reality of PSP. Nobody knew what was coming, apart from the Creator Himself.

That is one story. There are hundreds of truly terrible stories across the support groups, with the anguish and pain of PSP described daily by patients and by families caring for loved ones who are further along in the journey and can no longer write for themselves. There is no sugarcoating this disease.

When I started this blog, I thought I had Parkinson’s disease and planned to write once a year. Well, look what happened to that. I could not possibly have predicted any of it. Yet 6.5 years later, after more twists and turns than I could have imagined, the world and my country have been turned on their heads. My eldest daughter is happily married, and I was able to walk her down the aisle, although “wheel” would be more accurate. My son has lived through a period that once seemed unimaginable and is now happy and in a serious relationship, while my younger daughter is, like both of them, growing into a caring, honest and lovable human being.

I simply have no way of predicting what happens now. I know the likely framework, but I honestly do not know when, how or in what order. I do not know what the next challenge will be, physically or mentally, what will be thrown at me and my family, how I will cope with it, how I will get through it or whether I will always remain recognisably me.

Then there are all the things outside me. A great deal happens in this world, and I have no idea how it will change or how those changes will intersect with my remaining window of time. There may be no cure within that window, and probably will not be, but there could be advances in pain relief or technology that allow me to do things that would otherwise have become impossible. I simply do not know, and acknowledging that is not the same as wishful thinking.

So what do I do with “I don’t know”? In one sense, it places me alongside virtually everyone else, because none of us truly knows what is coming. I am further along the road than most and in a particularly tight spot, so the comparison only goes so far. But I still do not know. Therefore, I have to continue living, and I have to allow myself to hope.

Please do not misunderstand me. I am in a nasty place.

A therapist recently told me that I use on myself the same toxic positivity I used to write about. She is right. In virtually every conversation, I describe the latest symptoms and then finish with, “But apart from that, I’m OK,” or, “But all is good.”

Who am I kidding, the person I am speaking to or myself? Clearly neither of us is convinced. But I say it anyway because I hate the silence that follows the updates even more.

I am scared. Not of the end point. We all get there eventually, and I am satisfied that I have raised a great family and had at least some kind of impact, even if an early exit, missing so many of the things I had hoped to see, was not what I wanted.

No, I am terrified of the journey.

And yet, the journey so far has unfolded in ways I could never have predicted. I have discovered things I never thought possible, met people I never imagined I would meet and found a depth of faith I did not know I had in me. My road may be shorter than I once expected, but every day still contains the possibility of surprise, and I genuinely have no idea what is waiting around the corner.

That uncertainty contains both the fear and the beauty of life, and it faces us all.

At 3am on the 3rd of August, I see the beauty more than the fear.