I have written at length about the pain, anxiety and fear of PSP. All of it entirely true. But there is one upside I had not expected.
Freedom.
You are probably reading that word and laughing. He is tied to a wheelchair, can’t drive, can’t travel abroad, has a full-time carer. What freedom is that?
Fair point. But here is what I mean.
I am mentally freer than I have ever been in my life. Free of company policy. Free of the careful calibration required when speaking to those in positions of authority. Free of the quiet self-censorship that comes from worrying about pushback. I always had a tendency to speak my mind, ask anyone who worked with me, but there were always invisible guardrails. Career. Reputation. The politics of the room.
PSP tore them out.
Now I write what I want to write. I research what I want to research. I say what I actually think, about Israel, about antisemitism, about dying, about faith, without checking first whether it is convenient or comfortable for anyone else. Some of those pieces have landed hard. Good. They were supposed to.
This freedom comes at an unbelievable cost. I am not pretending otherwise. But the cost is already paid. It is baked into the diagnosis, into every fall, every lost capability, every morning that begins with the particular cruelty of PSP. Since I am paying that price regardless, I may as well collect what it buys.
And what it buys, unexpectedly, is a kind of courage.
I am braver as an advocate than I ever was as a consultant. I say things now that the old version of me, the one with a career to protect and partners to manage, would have carefully softened or left unsaid. I do not always get it right. But I am free to try, and free to fail, and that matters more than I expected it to.
Writing has become a passion. If I am honest, an obsession. And I am deeply aware that this freedom only exists for as long as my cognition holds.
I am also grateful to live at a time when technology lets me write at all, and order ice cream without getting up. On a tough day, that is not nothing.
It is, in fact, everything.
