Life has a way of teaching you to appreciate the small moments that carry immense weight. Lately, I’ve been overwhelmed—in the best way—by the kindness of others. From practical favors to heartfelt gestures, these “little things” have made a world of difference in my life with PSP.
One unexpected source of joy? My wheelchairs. Yes, plural. They’ve become symbols of both freedom and I’ve been able to be mobile – three weddings, walks with my wife, kids and dog and the ability to go to synagogue or to a physio session myself – Freedom! Of course, all of this unfolds against the backdrop of PSP’s rollercoaster—lately, my eyes have been getting worse, as has pain from the rigidity of certain muscles. Today, for example, I struggled to keep my eyes open. I had a surreal exchange with my Pilates trainer: she said, “Open your eyes,” and I replied, “They are open.”. She took a photo to prove otherwise—just tiny slits of light. As I write this the screen is a bit of a blur with or without glasses.
So it is not all unrestrained joy but in that context, I am more than positive – I am genuinely happy and grateful and today am feeling overwhelmed by the kindness I see in people near and far.
The Power of Small Gestures (and a Gentle Apology)
People are incredible. Friends, family, and even strangers have shown up in ways that might seem small to them but feel monumental to me. Someone picks me up, delivers something, cooks, builds, or simply takes me out for a change of scenery. Some play chess with me. Others send a quick message checking in or thank me (often unnecessarily) for something I’ve done. These acts, done from the heart, leave me feeling seen and cared for.
Kindness doesn’t need to be grand to be meaningful. I could list examples, but honestly, it would be overwhelming. And to be really honest, at times it is a bit much—but in the grand scheme of things, an overflow of kindness is far better than the alternative 🙂
My family carries the heaviest load, supporting me daily. But help extends far beyond them, to people near and far, some of whom I’ve never even met. To all of you: thank you. Your kindness, big and small, means more than I can express—even if I haven’t always responded as graciously as I should.
I’ve written before about how people struggle with what to say or how to approach me. And I’ll admit, I’ve been sensitive, stubborn as a mule, and a bit of a control freak. At times, I’ve bristled, putting up barriers or being too quick to call out discomfort or awkwardness. My sister said it best: “You’d have no idea how to talk to you.” She’s right. The truth is, as long as it’s genuine and comes from a place of wanting to help me or my family—which it almost always does—I deeply appreciate it.
So if I’ve pushed anyone away or made you feel unsure about reaching out, I’m sorry. A leopard doesn’t change its spots overnight, but I’m learning. We’re all finding our balance. And to those who’ve shown up despite my rough edges: thank you. Your kindness means more than I’ve let on.
And please note: I don’t want for anything. I truly don’t need or want gifts or gestures—in fact, I actively discourage that. I am blessed beyond description and wouldn’t trade places with anyone. Kindness, however, is always welcome.
My Wheelchair “Garage” Has Not Settled Down
Amid all this kindness, I’ve found joy in unexpected places—like my growing interest in wheelchairs. If I was a petrolhead before, I’m now the proud owner of a two-wheelchair “garage”: a lightweight roadster and a sturdy 4×4.
A few days ago, I picked up a 14 kg lightweight wheelchair, perfect for travel and easy to carry. But as a religious Jew, I needed a Shabbat-compliant option. That’s when my impulsive nature kicked in. Two days later, I was cruising the streets in my new Shabbat wheelchair.
For those wondering, a Shabbat wheelchair is designed to align with Jewish law, which prohibits directly using electricity on the Sabbath. The brilliant folks at Tzomet, an Israeli Rabbinic organization, create clever workarounds—delay switches, deactivated lights, minimal button use—to keep things functional while honoring tradition. It’s a fascinating blend of science and faith.
The Shabbat wheelchair, at 40 kg, is sturdier and more comfortable for local use but not ideal for travel. Together, my two chairs cover most of my needs—well, almost. Rain, extreme heat, bumpy surfaces, and stairs still pose challenges. And don’t get me started on disabled toilets. I’ve bumped into sinks, doors, and walls—sometimes all at once. To those who’ve mastered this art, you have my utmost respect.
Looking Ahead
So here I am: mobile, writing, and filled with gratitude. The pain and prognosis of PSP are still there, but I’m not counting. I’m focusing on the kindness that surrounds me, the freedom my wheelchairs provide, and the chance to keep growing.
My main target on the horizon is to lead the services on Rosh Hashana (Jewish New Year). I’m giving it everything I’ve got. I hope I’m humble enough to step aside if it’s not the right thing for my health—or for the community—because I wouldn’t want to do a bad job. But it is my goal nonetheless, and I’m working toward it with all my heart.
Thank you to everyone who’s part of this journey. Your support, whether a small gesture or a big one, makes all the difference.
And if anyone has tips for turning a wheelchair around in a disabled toilet without causing chaos, I’m all ears.
