Six months on – my No. 1 partner, and all our No. 1 partners

I had not intended to write a blog this week, but this is both a much-needed tribute to my No. 1 partner and, I think, something that applies to almost all of us living with PSP.

I am supposed to be resting my voice and preparing for the New Year prayers. But I realised this evening that tomorrow marks six months since my daughter’s wedding. In the English calendar it is exactly six months; in the Hebrew calendar, just over six months. Either way, I genuinely cannot believe it.

She is happy. I still get to see plenty of her. Her husband is wonderful and occasionally even allows me to win at chess against him. I am so happy for her.

Yet six months on, I find myself thinking about somebody else. The most important person in my life. My wife.

In our daughter’s wedding album there is a photograph of the two of us. I love it. Somehow she appears not to have aged a day since I first met her. It made me want to write this blog.

We have travelled a difficult road together these past few years. I cannot pretend to be the easiest husband. I am stubborn, impulsive and more than a little controlling. I carried plenty of baggage long before PSP arrived. Now I am severely disabled, living with a disease that shapes much of our present and casts a long shadow over the future.

This is not the life either of us imagined.

One of the strange realities of illness is that the patient sometimes gains time to reflect. I am retired. I write. I have spent countless hours thinking about faith, purpose, fear, suffering and what truly matters.

My wife has no such luxury. She is busy dealing with the practical realities of life: looking after me, worrying about our children, keeping a household functioning and somehow managing the endless stream of tasks that seem to appear each day.

While I often have time to step back and look at the bigger picture, she is usually the one making sure everything in that picture keeps functioning.

And that points to something important.

When somebody develops PSP, it is the patient who receives the diagnosis. But the disease does not stop there. The people who love them live with its consequences every day.

They organise, adapt, anticipate and worry. They shoulder responsibilities that were never part of the original plan. They quietly absorb frustrations and fears while helping the person they love continue moving forward.

Much of what they do is invisible. And too often it goes unrecognised.

My wife is fortunate to have wonderful friends and family around her. Our children are extraordinary. We are blessed in many ways. But blessings do not remove challenges.

PSP reaches deeply into the lives of families and carers as well as patients. They may not have the disease, but they live alongside it every day.

I fell in love with my wife at first sight as a teenager. That statement sounds embarrassingly romantic, but it happens to be true. After all these years, I love her far more now than I did then, but I don’t show it and I certainly don’t show her the appreciation she deserves. That is on me, not PSP, although the disease certainly plays its part.

She will probably cringe reading this. Public sentimentality has never been one of our shared hobbies. But I also feel a profound sense of gratitude to G-d. Somehow, all those years ago, He brought us together.

Throughout this journey I have found deep faith, purpose and meaning. Yet in many respects this experience has demanded even more from her than from me. While I have had time to reflect, write and search for the bigger picture, she has carried the practical burden of keeping life moving.

I have no clever conclusion. I know I am not always easy to live with. PSP certainly has not helped in that regard. I also know that the future may ask even more of her.

So while I can, I want to put something on record. I love my wife enormously. I respect her enormously. And I am profoundly grateful for everything she does, including the countless things that nobody notices (especially me!).

This post is about a lot more than the two of us. I also want to acknowledge every spouse, partner, child, sibling, relative and friend who stands beside someone living with PSP.

Every family experiences it differently. Every relationship is complicated. Ours certainly is. We have now been married for twenty-nine years. By the grace of G-d, I fully intend to celebrate our thirtieth anniversary together, and many more, even if it looks rather different from the future we once imagined.

And to my children, I hope that you experience, and for some of you continue to experience, relationships built not simply on love, but on commitment, care, respect and endurance..

Your father is able to fight this battle in large part because of your mother. Because of what she does. Because of who she is.

I promised myself I would not make this blog too sentimental. After all, this is supposed to be a blog about PSP. So I will simply say this.

Thank you for your love.

You have mine in bucket loads, even if one day this disease makes it harder for me to show it at all.

Six months ago, on the eve of the first marriage of one of our children, it was incredibly special to go down that aisle with you and with our daughter, even if one of us had to ride rather than walk.

Looking at that photograph now, six months later, I realise it captures far more than one beautiful day. It captures a lifetime. It captures the person who has stood beside me through everything.