When. How. And Sometimes… Again.

Yesterday I unexpectedly reversed one of the biggest decisions of my journey with PSP. It reminded me that life with a progressive illness is shaped by two questions: when to change and how to live.

Much about the way we live our lives comes down to two distinct types of decisions: When and How. Living with PSP is no different. The only real difference is that because the disease progresses so quickly, often with relatively little information to guide us, those decisions come thick and fast.

The When decisions are often the easiest to recognise because they are practical and tangible.

In the early days they include big topics like retirement from work, using a walking stick, telling people about the diagnosis (and actually pushing for the diagnosis for many of us) and, perhaps the biggest of all for me, giving up driving, where the risk is not only to yourself but to others as well.

Later come decisions about adapting your home instead of relying on stairs, bringing in a live in carer and beginning conversations about end of life planning. For me, two of the biggest decisions were accepting a wheelchair to reduce the risk of falls and changing my diet to softer/low texture foods while avoiding fast moving liquids like water to reduce the risk of choking, all while deciding to refuse the doctors’ recommendation of a feeding tube.

Later still come decisions about using a hospital bed and everything that represents, together with choices that may ultimately have to be made by other people on your behalf, such as hospital versus home versus hospice. Our responsibility early on is to make our wishes known, complete the necessary paperwork and appoint and brief a trusted Power of Attorney.

What strikes me is that most of these decisions are not really about whether they will happen. Sadly, there is an inevitability about many of them (there are so many more that I haven’t listed). The real question is when.

The second category is much more difficult.

How do we choose to live during this period while our bodies and minds are changing at breakneck speed?

How do we choose our attitude?

How open are we with others?

How much do we communicate? Yes, I freely admit I am an extreme example.

How do we preserve our dignity?

How do we nurture our faith?

How do we try to hold in the loss, grief, anger, pain and carry on?

How do we invest in our relationships with those we love?

Unlike the practical decisions, these are rarely binary. There is no obvious playbook. They are complex, deeply personal, dependent on character and constantly evolving. They are not simply right or wrong, black or white, zero or one hundred. Yet they may be the decisions that define us most.

The irony is that these How decisions often become drowned out by the noise created by the When decisions. We spend so much time thinking about wheelchairs, medication, appointments and adaptations that we sometimes forget we still have choices about the way we face the journey itself.

Yet the two categories are not independent.

The way we answer the How questions often changes the answer to the When questions.

I found myself experiencing exactly that over the past few weeks and especially, yesterday.

At the end of May I made what I believed was one of the hardest decisions of my illness. I decided, and naturally (being me!) I wrote about it, that it was time to hang up my spurs as a leader of prayers on the High Holy Days. It is a responsibility that meant the world to me and something I have done for the vast majority of my life but which at the time the decision felt like a complete slam dunk. My eyesight was deteriorating, nerve pain was clouding almost everything and I genuinely believed it was the responsible thing to do.

Yesterday, thanks to the kindness of the synagogue leadership, successful Botox treatment, new medication that has eased the nerve pain and a close friend who has generously agreed to stand in should I be unable to continue, I found myself doing something I never expected.

I reversed the decision.

Assuming the practical arrangements can be finalised and there are no unexpected setbacks, I intend to lead one of the main prayers after all.

To many people that may not seem like a particularly significant decision.

To me, it is enormous.

Leading those prayers is more than an honor, it is a huge responsibility and, if I am honest, a risk. It pushes me close to my limits and some people, including a few who care deeply about me, think I am completely mad. I will be sitting down throughout, and there is now a clear backup plan if my body simply says, “Not today.” Knowing that has made all the difference. I believe that the Botox treatment for my eyes, the new pain medication and the sunglasses all help me in this regard.

Perhaps the greatest irony is that someone living with a progressive neurological disease may understand those prayers about life, mortality, hope and faith more deeply than ever before. I certainly feel I approach them differently today than I did a few years ago.

As I have written many times before, “Man plans and G-d laughs.” None of us knows what the next two months will bring. PSP has taught me not to make too many confident predictions. Yet simply allowing myself to aim for that goal has given me renewed energy, renewed purpose and something meaningful towards which to work.

So where does that leave us?

The When questions determine what happens to us.

The How questions determine who we become.

The practical decisions shape our lives, but the personal decisions shape who we become while living them. Sometimes our answer to the How questions even changes the answer to the When questions.

And every so often, we are given the unexpected privilege of reversing a decision we thought was final.

I pray that I will not have to reverse this one again and that, when the time comes, I will be worthy of the privilege of representing my community in prayer, whom I love and hope I do ok by them.