Coping with Fear

My computer did not want me to write this article. The dictation software, my usual lifeline, refused to cooperate. I then managed to override and delete a version entirely. The technology appeared to be sending a message: this is a subject best left untouched.

Stubbornness won. It usually does.

I felt this was an important subject, both for myself and for others, and one worth writing about properly. This piece is the companion to yesterday’s post on fear itself. Today I am thinking about how we cope with it.

Coping with fear when you have PSP is not a single challenge. It is a succession of them, arriving in shapes and sizes you had never imagined, compressed into a very short period of time, with very little warning and even less room to breathe. In the “symptom race,” fear is always present, foreshadowing the next stage and accompanying the current one.

I am not going to deliver a psychological lecture on the taxonomy of fear. You already know the list. Fear of diagnosis. Fear of the future. Fear of dependence. Fear of losing the people you love. Fear of what you are losing in yourself. You know them.

And then come the more specific fears.

For me, the “Big Two” are the fear of the next fall and the silent, ever-present threat of choking. Alongside those sit the practical terrors: injections into the eyelids simply to see the world properly, wheelchairs, swallowing assessments, losing control over your own body one faculty at a time. And somewhere underneath all of it sits the quieter existential fear: that I will at some point be locked behind a wall of glass that prevents me communicating with my loved ones.

The list is long.

And it is real.

What I can offer is not theory but experience. And I am going to keep it practical today, which means setting aside the two deepest pillars of my coping strategy: faith and family. Not because they are secondary, quite the opposite. They are the roots from which everything else grows. But they deserve their own discussion, and everyone’s circumstances are different. What follows are the additional mechanisms that have helped me stay upright mentally.

Unbottling It

For me, it is writing.

I realised some time ago that writing is my way of talking to myself, primarily, and of processing what is going on. It gives me a way to get what is inside my head onto the page instead of letting it ricochet endlessly around my mind like a squash ball trapped in a closed room.

Making the blog public rather than keeping a private journal added a critical layer of discipline. Editing forces me to sit with a fear until it makes sense. I have found that unbottling the raw truth, the falls, the “Power Downs,” the humiliations, the absurdities, is genuinely cathartic. I had not expected people to read it. But the act of publishing turns out to be important to my coping.

More conventional approaches include therapy, talking to friends, prayer, humour, or simply sitting over coffee with someone who will listen properly. But the principle is the same: expression matters. Living with this kind of fear silently, allowing it to ferment internally, is genuinely destructive.

Fear grows best in silence.

Speed as a Strange Mercy

This will sound completely counter-intuitive, but bear with me.

The velocity of PSP is brutal. And yet there is one strange consolation buried within it: the speed means you rarely have long to dwell on any single fear. You have days, sometimes weeks, to confront one new reality before the next arrives demanding attention. You realise you need a full-time carer and begin to sit with the fears that brings, but you do not have long to dwell. You have to execute a plan.

It becomes firefighting.

As someone who spent much of his life operating at 240 km/h mentally, constantly moving, solving, doing, I have found that living under this kind of pressure leaves surprisingly little room for prolonged rumination. You simply do not have the luxury of emotionally unpacking one problem before the next one appears at the door.

In almost every other respect, the speed of this disease is a cruelty.

This is the one small mercy I have found within it: you are often moving too fast to stay frightened of the same thing for long.

Not Reinventing Yourself

This may push against some fashionable thinking around serious illness, but I do not believe PSP is the moment to become someone you are not. The terrain is too unforgiving and the timeframe too compressed.

What it is, I think, is a moment for adaptation.

That means being honest about your weaknesses, the ones that now create difficulties both for yourself and for those around you. In my case: impulsiveness, frustration, occasional dips into depression, and a lifelong instinct to control everything around me.

That inventory is not comfortable to compile. But once you know what you are working with, you can put practical measures in place to try to mitigate them.

It also means leaning hard into your existing strengths. Writing. Cognitive work. Humour. Chess. Coffee. Friendship. Routine. Anything that preserves continuity between the person you were and the person you still are.

I may now have a different “garage” full of wheelchairs and walkers instead of fast movement and independence, but I am still recognisably me.

These things sound small. They are not small. They are anchors.

Learning to Rely on Others

I have spent most of my life as a doer. I prefer solving problems myself. Remaining in control. Staying useful.

That personality type collides badly with a progressive neurological illness.

Learning to accept help from loved ones and from my full-time carer, incrementally, without turning every interaction into a battle for independence, has been one of the harder adjustments I have had to make. A year of gradual softening has helped.

But it genuinely helps.

Support groups have helped too. You cannot become an expert in every domain PSP touches: neurology, swallowing, physiotherapy, speech therapy, dietetics, mobility, benefits, carers, adaptations, medications, equipment. The learning curve is simply too steep.

But you can learn quickly from people who are already further down the road than you are.

That compressed transfer of experience has real value. Sometimes it feels less like advice and more like being handed survival notes from people already navigating the same storm.

I hope this blog contributes something to that.

The Catastrophist

I have learned this repeatedly, and it has become something close to a personal mantra: the anticipation is almost always worse than the thing itself.

The injections were worse in my imagination.

The wheelchair was worse in my imagination.

Numerous future scenarios have turned out to be worse in my imagination than in reality itself.

Fear is a catastrophist. Reality is usually more measured.

I hope, with G-d’s help, that continues to be true.

The fears are real. I want to be absolutely clear about that. This is not reassurance for the sake of reassurance. PSP is hard. It is frightening. It strips away certainty quickly and without negotiation. It will never be easy.

But human beings appear to possess a greater capacity for adaptation than we initially believe possible.

I am adapting, with relative success.

I am aware of others, including carers, who have found that much harder, and I genuinely pray they find the tools and support they need. The fears they carry are real as well.

So, I suspect, is the resilience they may not yet realise they possess.And if you take nothing else from this piece, take this: unbottle it.

Writing. Prayer. Humour. Therapy. Friendship. Coffee. Conversation. Whatever form it takes for you, find some way to let it out.

Because fear grows best in silence.