Standing at the Threshold

I don’t usually bring my faith front and center in my blogs, but tonight I feel compelled to. Tomorrow for the Jewish People is the festival of Passover. For those with some connection to the Hebrew Bible, it is the night before the Jews — led by Moses — left Egypt, the land in which they had been born into slavery.

It was the night before the night of freedom.

And yet the how, the when, the what-it-would-actually-feel-like: none of that was known. It must have been almost unbearably tense to be one of the Children of Israel, as in fact it would have been tense to be anyone in Egypt, not knowing how it would play out, but having to dig deep into reserves of courage.

As someone with PSP, I just don’t know how it is going to play out. I feel my body weakening and I am not oblivious to the deterioration, but I am not on a crash cart surrounded by family towards the very end of the journey. I am on the slide towards the latter parts of the disease: needing a carer, effectively fully disabled (I had to be wheeled to the chair I am writing from by my wife), having lost my independence. I am entering what I have always feared as the period of indignity — not being able to do the things I did regarding personal hygiene and care, and being forced to wear a diaper.

Yet like the night before the night before Passover, I genuinely have no idea how things will change going forward. Will it be a general creep towards death through the gradual loss of skills and capabilities? Or will it be something different: an infection, pneumonia, a fall, something that prompts an ever faster exit. I am in year six of PSP (to the best of my knowledge) and the life expectancy is six to ten years according to most scientific authorities. I simply don’t know, and I don’t know how long it is before I enter the evening before Passover — the last act.

I think I will be okay in the last act. When I know what is happening, when the moment has arrived, I am usually very strong and resolute. It is the unknowns that cause me pain.

I don’t know what to expect, other than knowing that all the human odds point towards this being my approximate time of exit. The physical facts seem to confirm it: I appear to be following the path that science lays out, with some anomalies. The strength of my cognition is one. The suspected TIAs are another. And my decline has been faster than average: from running to walking, to a cane, to a walker, to an electric wheelchair I could drive, and now one in which I am pushed.

It is terrifying not knowing how I go from here to there. It is like the night before the night of Passover. When I am in the exam I may struggle, but I know what the questions are and it is down to me to perform. It is the waiting that undoes you.

I am a positive person and I plan on there being many more Passovers, as we all do. But I genuinely don’t know if or how I will be at the next one, given my progression to date. This is very possibly the last time I can write relatively freely about how it feels. It is haunting.

PSP is horrible. It seems to work differently in different people but with usually the same result: death within a few years, and a mix of symptoms that shift and accumulate without warning. It shares the TAU protein with Alzheimer’s, and my specific strain appears to have a connection to Parkinson’s. Worst of all, there is no treatment. It progressively worsens, and I can honestly say I feel the progression in my body every day. I just don’t know what is next around the corner.

And yet the fear has consistently proven worse than the actuality. The world keeps moving, and I keep on.

My faith kicks in alongside my logic. I know that many, many people have trodden this path before me, and I believe this is the path that G-d wants from me. In fact this path has opened me up to some truly deep insight and to accomplishments I would otherwise have been unable to reach: the true joy at my daughter’s wedding, the ability to think and write books, the quality time with my children, and even learning how it feels to take less control. (No, I have not enjoyed that last one.)

It is the night before the night of Passover and I need to dig deep. This Passover will be very different for me: without synagogue, and without eating much of what the Seder night offers. But like the story of Pesach itself, it is a time to put faith at the front and trust in Him, and in my own reserves of strength, to face what is to come.

Tonight I light my candle, search the corners, and wait. Whatever comes next, I intend to meet it standing.

By sharing these fears I in no way wish to give the impression that I am ungrateful or unblessed. These are honest reflections, and I don’t think I am alone in them.

I have come to terms with the fact that my span will almost certainly be shorter than I would have wished. I pray I am given the ability to keep harvesting experiences, and a chance to find meaning, for as long as I am able before that time comes.

I wish all my readers a Happy and Kosher Passover, a Happy Easter, or whatever is the right greeting in your faith, belief, or tradition.

My prayer to G-d is that my family will continue to live the story of Israel in its homeland and be able to contribute to the good of the nation of Israel, Jewish people and in some way most of all make that impact felt in the broader world where a lot of people are looking for a way to live the adage of the Old Testement – to love your neighbour as yourself and to love the stranger in your midst.