From a Prison to an Ark – A good friend visited me recently—someone whose advice has been a lifeline during this period. We were talking about how much time I now spend at home. I admitted that, surprisingly, I’ve grown to like aspects of it. Despite the boredom and restlessness that sometimes creep in, I’ve found comfort in my surroundings: air conditioning, multimedia, a Nespresso machine, books, a garden, space—and most importantly, my family.
Oddly enough, one of the things I enjoy most is something I never thought was important: the tiled floors. Now that my walking has become more like shuffling, I move with much more freedom on a tiled floor. Outside, everything becomes harder—more friction, more risk, more heat. Inside, I move with much more freedom.
My friend offered a perspective shift. Instead of seeing my home as a prison, he suggested I think of it as an Ark—a place of refuge, safety, and comfort. At first, it felt like just a clever metaphor. But the more I thought about it, the more it made sense. It’s not just about me—it’s also about how others see me. If I view my home as a place I want to be, then those around me can relax, knowing I’m not suffering in confinement but finding peace in sanctuary.
Of course, it’s not always easy. Just yesterday, we were planning changes to the house to prepare for the future—redesigning a bathroom to meet disability needs, and adding a bedroom and space for a potential live-in carer. It was overwhelming. I got upset and stormed off. I regret that. But it reminded me that acceptance doesn’t mean it won’t hurt. Of course, I am not without knowledge of what is likely to happen.
I’ve never been a homebody. I’ve always been impulsive, restless, eager to get out and explore. But that’s no longer my reality. Like many of us learned during COVID, staying home can be both a challenge and a chance to adapt. I’m learning to find meaning in the relative peace it brings.
We also talked about how everyone has their own battles. A friend had a medical procedure today. Another is facing job loss. It reminded me—again—that I’m not alone. My situation is unique, but not exceptional. We all face change. We all adapt in our own way. I’m fighting, but I’m also learning to accept. It’s a rear-guard action, but it’s mine.
I’m not in denial. I know what I have—PSP—is brutal. I was reminded of that today when someone asked why I use a walker. When I told her, she paused, and a look of profound sadness and shock came over her face. She said she had known someone with PSP. Her reaction said it all. It was a sobering moment.
As Winston Churchill once said, “Attitude is a little thing that makes a big difference.” That sentiment resonates deeply with me. Acceptance doesn’t mean surrender. Knowing what I face makes me more grateful for every day I still have my mind, my voice, my ability to care. It makes me want to push back against the later stages of this disease for as long as I can.
So whether it’s an Ark or a prison, this is my space. And I choose to make it a place of peace, connection, and purpose. I can still care about others. I can still be present. I can still live.
Wishing you all Shabbat Shalom and an Ark it is.
