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I will not pretend that I have not been angry or afraid over the last two days.
The nerve pain has returned, and today I experienced something that genuinely frightened me. For the first time in a long while, I found myself confronting a hard truth: how do I face my fears when I know I cannot defeat the disease causing them?
Today, two answers came from unexpected places.
The first came in a reply to yesterday’s blog from the carer of someone living with PSP. I had written about my instinct to protect my family by turning inwards and building emotional walls. She gently reminded me that love does not work that way. My family will walk this journey with me because that is what love does. By shutting them out, even with the best of intentions, I would deny both them and me the opportunity to share that love.
The second answer came from another part of my life. Each week I write about role models from the Bible, and this week’s subject is the Prophet Jeremiah. Whether or not you are religious, I hope you’ll stay with me, because the lesson reaches far beyond faith.
By almost any modern measure, Jeremiah would be considered a failure. For decades he pleaded with his people to change their ways. They ignored him. He warned that Jerusalem would fall, that the Temple would be destroyed, and that exile would come. In the end, everything he feared came to pass.
He was right, yet he could not stop it.
That was the moment something clicked for me.
As Maimonides explains, the role of a prophet is not to guarantee success but to deliver God’s message faithfully. The outcome is not his responsibility. His responsibility is to remain true to his calling.
Jeremiah’s mission was never to save the nation single-handedly. His mission was to stand for the truth, whether people listened or not.
And when disaster finally came, he did something even more remarkable. He stayed with the people. He could not remove their suffering, but he refused to abandon them to it.
That is a lesson that extends far beyond religion.
So much of life is spent chasing outcomes we cannot control. We judge ourselves by victories and defeats, by whether we achieve the result we desperately want. Yet many of the most important battles in life are not about winning. They are about how we choose to fight.
Winston Churchill expressed a similar truth in very different words: “If you’re going through hell, keep going.”
My late grandfather fought at El Alamein. He did not win the war on his own. No soldier could. But he still had a duty to play his part with courage and determination.
That is the lesson I needed.
The odds of me overcoming PSP are, humanly speaking, extraordinarily small. Unless there is a miracle, this disease will continue its course. I cannot control that outcome any more than Jeremiah could prevent the destruction he foresaw.
What I can control is how I respond.
I can choose to meet each setback with as much courage, grace, kindness and faith as I can muster. I can continue to write in the hope that my experiences may help someone else, just as so many people have helped me. I can refuse to let fear make my decisions for me.
None of this means it will be easy.
Last night I was overwhelmed by fear. Today I genuinely wondered how much more my body could endure. For a few moments, I found myself in a place mentally that I never expected to reach.
Those feelings were real.
The fear was real.
And I do not intend to pretend otherwise.
But I also know this.
My battle is no longer about defeating PSP. That outcome is not in my hands.
My battle is about refusing to let PSP determine the kind of man I become. It is also about holding the hand of the family I love, allowing us to make this journey together rather than alone.
The disease may shape what happens to me. It does not have to shape who I am.
That battle, with God’s help, is one I can fight every single day.