Am I Afraid?

It is a question I get asked from time to time, and I never have a simple answer. The honest answer is both no and yes.

No. I am a G-d fearing person who believes there is a reason for everything, and that this challenge has been given to me because, by definition, I must have the strength somewhere within me to cope with it. That belief is not blind optimism. It is the ground beneath my feet. I also take genuine comfort from the fact that, at every stage so far, the fear has proved worse than the reality. Even now, as my hip and leg pain test me more than before, that remains true.

Yes. Of course I am afraid. I would be lying if I claimed otherwise. PSP, at its most advanced, carries something of the cruelty of Alzheimer’s and the physical destruction of Parkinson’s. I am not prepared for what is coming, and I am not going to pretend I am.

What I do know is this: I am far more afraid of the journey than I am of the destination. Death itself does not frighten me in the same way. I believe it brings an end to suffering for my family and a new beginning for me. It is the road leading there that frightens me.

More than anything, I fear for my wife and children. For the pain they have already carried, the pain they carry now, and the pain still to come. That is the fear that sits heaviest.

And yet, in daily life, I do not walk around consumed by fear. I feel motivated. Focused. Driven to write, to think, to leave something worthwhile behind. The fear is real, but it does not define my days.

When I look directly at it, as I am doing now, what I notice most is not fear of death itself, but fear of what PSP may take from me and what it may ask of those I love most. That is a fear I cannot ignore. But neither will I surrender to it. I intend to use it to push back against this disease for as long as I can, to stay present, and to keep going.

And when the harder stages come, I will not face them alone. I know that with certainty. The prayers, kindness, and support of so many people have carried me this far, and I believe they will carry me further still.

So am I afraid?

Yes and no.

And somehow, both answers can live side by side in peace.