Many people have suggested that I record a video message for my future grandchildren—those I may never meet, or who may only know me as a shell of myself, ravaged by PSP.
It’s one of those things people advise you to do. And it was the last item on my list.
A will.
An end-of-life plan.
A clear spreadsheet with all the bank account details.
A small but important list.
There were also other opinions—voices that opposed this idea.
A loud one in my own head resisted it too.
It felt defeatist.
It implied inevitability.
It felt like a self-fulfilling prophecy.
But I made the video last week.
I hope it won’t be needed for a long time. But I felt the time had come.
My decision was supported by a written exchange with my specialist. After I gave him a factual update, his heartfelt response—translated and edited to protect confidentiality—essentially said:
“I cannot think of any promising treatment once the disease has turned in this terrible direction.”
So where is the positivity I’ve always tried to hold on to?
It’s in the content of the video—which I’m not going to share.
I am surrounded by the best family and friends anyone could ask for. I live in a beautiful place. I am deeply grateful for the blessings I have—and continue to have. Even as PSP closes in, I still feel I’ve lived, and continue to live, a blessed life.
I’m grateful for every moment in which I retain my mental clarity and cognitive abilities. I will continue to use that channel to share meaning, for as long as G-d allows.
Yes, I have moments of darkness and depression. Let’s be honest—who wouldn’t?
But I am truly thankful for the life I’ve lived and the family I’m blessed to have around me.
Life isn’t just about longevity—though of course, that’s nice.
It’s about quality of life.
I can no longer do many of the things I once could. Just over a year ago, I ran a 10K. Now, it looks like I’ve taken my last plane trip. I may be days or weeks away from needing a wheelchair. But I am still incredibly grateful. And, objectively, I am satisfied with my life.
Some readers might think I’m forcing myself to believe this. I’m not.
This is not a defeatist note. It’s a deeply positive one—grounded in reality, not fantasy. If I don’t speak practically and honestly, then I risk ignoring the true gifts G-d has given me. I would be turning away from the beauty that surrounds me, and waiting for a magic that doesn’t exist in this world.
Of course, I pray for a miracle. But I would, in some ways, like any miracle reserved for me to be spread among those left after me—to ease their pain and to bless the future that exists without me.
And let me be clear: I have already been the beneficiary of many, many miracles.
Some came through my mum, my wife, my children, my friends, and others.
My faith doesn’t depend on one magical miracle in the form of a cure.
It rests in the ongoing handholding I believe G-d has offered me throughout my life—even through the darkest moments.
I hope I have made the video too soon and that it goes through many, many updates. I am not overtaken by a feeling of impending doom—I am just a realist who can feel my body change and who is trying to be one step ahead of the curve.
