Naming my Fear – I Simply Have No Idea What Happens Next

I have been thinking about writing this for a while and have chickened out but I have decided that I have to. I have to address my fears.

I know a great deal about PSP, probably more than is good for me. I have read the research papers, spoken to the specialists, followed the experiences of countless patients and families, and written extensively about the disease myself.

Yet despite all of that knowledge, I simply have no idea what happens next.

That uncertainty doesn’t fill me with panic, but it does leave me with something that is often just as difficult: uncertainty about how I get from where I am today to where this disease almost always leads.

I know the broad medical direction of PSP. I know the recognised stages and have even written about them. I also know that, six and a half years into living with this disease, I have entered the period where the statistics become increasingly uncomfortable. Most studies quote a life expectancy of somewhere between six and ten years after symptoms begin, with recent PSP Awareness data suggesting an average of around seven.

The statistics, however, don’t match how I feel.

At the moment I actually feel reasonably well. In seven weeks’ time I hope, G-d willing, to do something I had convinced myself I would never manage again: lead the prayers for the Jewish New Year.

Yes, I need a wheelchair. Yes, I need a full-time carer. Today I paid for a relatively short outing with a lot of severe pain afterwards. There is no pretending this disease is mild.

But mentally I still feel like me. Perhaps I am as sharp as I have ever been, although my recent blunder in a game of chess against one of my closest friends may suggest otherwise.

That is what I struggle to understand.

How do I get from here to there?

How does someone who still enjoys writing, laughing with family, arguing over football, playing chess and making plans gradually become the person I have seen so many times in videos and read about in medical journals? I know almost nobody escapes those later stages of PSP, yet I cannot mentally bridge the gap between today’s reality and tomorrow’s.

As I wrote in my previous article, I am naturally a Monitor rather than a Blunter. I cope by understanding. I want to know what lies ahead. Information usually gives me comfort.

This time it doesn’t.

Of course, I pray that G-d will spare me the worst stages of this illness. Whether through a miracle that prevents them altogether, or through His mercy by shortening the  worst part of what lies ahead, my deepest hope is that neither I nor my family will have to endure everything PSP is capable of bringing. That too would be a miracle in my eyes.

Perhaps that hope is unrealistic.

Perhaps it isn’t.

Only G-d knows.

PSP is unlike many other diseases. There is no scan that tells you precisely where you are on the journey. There is no treatment that dramatically changes the course of the disease. Instead, it often feels as though you are drifting slowly down a river. You know where the river eventually leads because others have travelled it before you. You simply cannot tell how far away the waterfall is, or whether the current will suddenly become faster tomorrow or remain gentle for years.

That uncertainty is strangely difficult to live with.

This is not a negative article, although I know some people will read it that way.

Some will ask, “Why worry about something you cannot know?”

Others will tell me not to tempt fate by talking about it.

I understand both reactions, but I disagree.

I believe that fears which remain hidden usually become larger. Fears that are acknowledged can begin to be managed.

What surprises me most is that I am not actually frightened of the very end. I have faith. I trust G-d.

Death itself does not trouble me nearly as much as the possibility of what may come before it.

It is the loss of independence. The increasing dependence on others. The burden placed upon the people I love. The loss of all control and dignity.

That is what frightens me.

Oddly, those fears are often strongest on the days when I feel relatively well. On the difficult days I am too busy coping with the present to think very much about the future. On the better days my mind has more room to wander, and sometimes it wanders into places I would rather it didn’t.

So I write.

Not because writing removes the fear, but because naming it somehow makes it more manageable.

How can someone who says he trusts G-d still be afraid?

I think the answer is simple. Faith does not eliminate fear. It gives us the strength to live with it.

Even the greatest figures in the Bible experienced fear. Courage was never the absence of fear; it was continuing despite it.

I therefore think it is perfectly acceptable to admit that having PSP scares me.

Not every hour. Not every day. Fear does not dominate my life. But it visits from time to time, and pretending otherwise would not be honest.

If anything, I hope this encourages other patients and carers.

If you are frightened, that does not mean you are weak.

It does not mean you lack faith. It does not mean you have given up. It simply means you are human.

Talk about it. Pray about it. Share it with someone you trust.

Don’t allow fear to isolate you until it grows into despair, anger or broken relationships.

To family and friends, please understand that fear does not always need fixing. Sometimes it simply needs acknowledging. Sometimes the greatest gift you can offer is not advice but a hug, a hand on someone’s shoulder, and the reassurance that says, “We are in this together, and we will face whatever comes together.”

Tonight I will probably be watching the World Cup Final with my children, laughing, arguing about referees and enjoying being together.

None of that contradicts what I have written today.

Joy and fear can exist at exactly the same time.

So can faith and uncertainty.

Today I simply wanted to say something out loud that many people living with serious illness quietly carry inside.

I have PSP. I trust G-d. And yes, sometimes it scares me.

I suspect that admitting that may be one of the healthiest things I can do. Having written this morning about the Job I never applied for, this I believe is one of my tasks.