The Cliff Never Came

I will admit, I was worried about what would happen after my daughter’s wedding in March. It was probably the happiest day of my life. Through all the progression of PSP, all the uncertainty and all the planning, I simply wanted to be there and experience every moment I could. It became such a huge goal that I feared I would fall off a cliff afterwards. For months, everything had been about getting there.

Looking back now, I realise that what came after the wedding was nothing like I had imagined.

Part of me imagined life would become quieter. Perhaps retirement would consist of vanilla ice cream, binge-watching television and the occasional hospital appointment. After all, retirement is supposed to be boring, isn’t it?

If I’m honest, I was frightened. I’ve always been someone who struggles to sit still, always needing a project, a challenge or something to build. The thought of slowing down worried me almost as much as the disease itself.

Yet looking back over these past four months, I’m struck by just how much has happened.

Not because life became easier.

Quite the opposite.

During this same period I developed severe neuropathic pain that, at one stage, was almost unbearable. My eyesight deteriorated further, leading to Botox injections into my eyelids and FL-41 glasses to help with the light sensitivity. PSP has continued progressing, just as it always does.

Life, however, carried on alongside it.

Looking back, I realised that while PSP was taking things away, I had quietly been building new things at the same time.

I published my fourth and fifth books and started work on my sixth. I created a Guide to Psalms covering all 150 chapters and developed practical resources for people living with PSP, including emergency protocols and templates inspired by our own experiences, a PSP Decision Bank of Questions, a guide for newly diagnosed patients and several other resources that I wish had existed when I first heard those three letters. All of them are freely available for anyone who might find them useful.

I also wrote around 130 new blog posts in English and translated almost every one into Hebrew, admittedly with a little help. Somehow, the writing just kept coming.

Alongside that, I spoke in webinars and a live Q&A session, supported charities and community groups by sharing the patient’s perspective, recorded a video for carers, wrote articles and donated books to communal leaders across the UK.

Perhaps the biggest surprise has been that one of my greatest fears never came true. I somehow worried that marriage would mean seeing less of my daughter. Instead, she and my son-in-law have remained a huge part of our lives. We see them regularly and, as I write this, they’ll be here in just a few hours to spend Shabbat with us. I honestly couldn’t be happier.

The wedding may have been the happiest day of my life, but it certainly wasn’t the end of that chapter. In many ways, it was the beginning of a wonderful new one.

But I wasn’t only creating.

I was adapting.

After years averaging around three and a half hours’ sleep a night, I’ve managed to increase that to around five hours on many nights, and sometimes more. It still isn’t brilliant, but it represents real progress and is probably one of the most important things I can do in trying to slow the impact of PSP.

Working with my doctors, we found a medication regime that brought my nerve pain under far better control than I thought possible only weeks earlier. Botox and FL-41 lenses have made my eye problems much more manageable. New ways of dictating have allowed me to continue communicating when my speech isn’t cooperating.

I have also largely maintained my yoga, exercise routine and one-minute plank. None of those things is dramatic, but consistency rarely is.

One change that has meant a great deal to me personally is returning to daily synagogue services. Armed with a hat, FL-41 glasses and a determination not to let sensory overload win every battle, I have gradually found my way back. I’ve also committed to leading services from my wheelchair over the Jewish New Year. Whether that continues depends on factors beyond my control, but I’m grateful simply to be trying.

I’ve also learned that adapting sometimes means accepting help. Over these past few months we’ve welcomed a full-time carer into our home, something I had genuinely feared but which has worked far better than I imagined. We’ve ordered equipment such as a hospital bed before I truly need it and become more realistic about my limitations after the disaster that was the evening of the World Cup Final (not the match – that was another disaster). Those decisions weren’t easy, but they have made life better. I’m learning that resting more and stressing less isn’t giving in. It’s simply another way of moving forward.

Reading that list back, I almost hesitate to publish it because it sounds self-congratulatory.

That isn’t why I’m writing.

My list is simply my list.

It reflects the things that give me purpose. I enjoy writing. I enjoy researching. I enjoy solving problems and sharing what I learn. Thankfully, my cognition has remained relatively well preserved, allowing me to continue doing those things even while other parts of PSP continue to progress.

Your list will almost certainly look different.

That’s exactly the point.

A diagnosis doesn’t replace who we are. It changes how we live and how we contribute, but it doesn’t erase our identities. Patients are still parents, spouses, grandparents, colleagues, volunteers, teachers, creators, listeners, encouragers and friends. The way we contribute may change, sometimes dramatically, but purpose doesn’t disappear simply because illness arrives.

And not everything has to be profound.

I’ve continued trying to be a loving husband and, if occasionally annoying, father, although that has become more difficult with my physical decline and the behavioural changes that PSP sometimes brings. Somewhere along the way, a dancing chicken became part of our household. And yes, I’ve also consumed rather more vanilla ice cream than any sensible person probably should.

The reason I write this isn’t to make a list of accomplishments.

It’s simply to remind myself that life doesn’t stop at a diagnosis.

Looking back over these past four months, I’ve learned that even in the middle of illness, life can still be surprisingly full of purpose, adaptation and growth.

I don’t know what the coming months will bring. PSP certainly doesn’t make promises. There will undoubtedly be more challenges ahead.

But if these past four months have taught me anything, it’s this: while illness may take things away, it doesn’t have to take away our purpose.

And, if I’m being completely honest, I can’t wait for Shabbat to begin in a few hours. Because while books, blogs and projects matter, having my daughter and son-in-law walk through our front door is a reminder that some of life’s greatest blessings didn’t end with the wedding.

And my son-in-law loves chess!!!