It was probably much less than a second, maybe a nanosecond, or whatever the right term is -but it was crystal clear. Don’t worry, I didn’t see the Gates of anything or flames or tunnels. It wasn’t that kind of moment. But it was life changing.
For days, a specific thought has been circling in my mind: at what point does everything change? When does PSP truly take hold and begin to pull me into that terrible vortex -the one where you lose control over the basic functions of life? Confined to a bed. Dependent on a feeding tube. Requiring full-time care. Unable to communicate. I hope and plan for many years to come but that is not in my hands.
From what I’ve heard, for some it’s a gradual process, unfolding over weeks or months with no clear turning point. For others, it’s a sudden shift, triggered by a fall, a choking episode, or an infection.
There’s no doubt I’ve been getting worse. But I’m still active. I can communicate. I get around, more or less. I still manage to annoy my wife and kids more than is probably appropriate. Sure, I face challenges, and it’s not easy, but I have a good life. I’m fully aware of what’s happening. I am of course scared. Scared of losing control. Scared of becoming dependent -something that clashes with the part of me that needs to be in charge.
So this idea -that there might be a single moment when everything changes -has been on my mind.
I thought that moment had come on Friday…it hadn’t.
It happened in a split second. Probably less than that. I was eating a cracker, and for the fourth time in a week, I choked. After a few seconds, I managed to clear it. But in that fleeting instant, I had a crystal-clear thought: this is it. This is the moment. This is when everything starts to fall off the cliff.
For that briefest of moments, I felt a strange calm. A quiet realization. It wasn’t fear and I wasn’t panicked. Then, just as quickly, I was back to solving the problem – trying to breathe, trying to fix it. My wife and I got cleared.
Being a practical person, I’ve turned that moment into a plan. We’re taking steps to manage the choking -training the family, keeping a LifeVac device nearby, doing muscle exercises recommended by the swallow specialist after my last FEES endoscopy, and making changes to how, what, and when I eat and drink.
I’m also going to prepare in other ways, emotionally, physically, and practically. Conversations about what matters. Making sure there are no regrets if that moment truly comes.
Since then, life has returned to its usual rhythm – my son annihaliating me at chess for one thing (but I got one game out of three)… But I can’t pretend that the choking -or that moment, didn’t leave a mark.
We all have moments in life that become inflection points. This one, more than anything, has sharpened my commitment to a positive, glass-half-full approach. I want to enjoy life. I want to enjoy my family. I want to live in the present, not dwell on the future. But I also want to be prepared, all of us should be, so that when the time comes, it doesn’t shake us more than it needs to.
I hope and pray that it is a long time before another moment.
2 Responses