Beyond the Buzz

SCI research is making waves — but it’s the quiet wins we’re still waiting for.

The Buzz That Follows a Breakthrough

The 60 Minutes segment dropped.
Then came the texts. The DMs. The emails.
Everyone wanted to know if I’d seen it.

And of course I had.
I’ve been following Onward’s progress for years, how could I not?

A woman with a complete spinal cord injury, walking again through brain-controlled stimulation.
To the outside world, it looked like a miracle.

And yes, it is inspiring. The science is real. The innovation is astonishing.
And for those it may eventually help? Potentially life-changing.

But for most of us living with spinal cord injuries… nothing has changed.

Breakthroughs That Don’t Break Through

I’ve been part of this world for 14 years. I’ve seen a lot of breakthroughs — or at least, the headlines that call them that.
Not one has made a meaningful impact on my day-to-day life. Not yet.

I still can’t move any part of my legs.
I still wake up in a body that doesn’t follow my lead.
I still live in a world that doesn’t quite know how to navigate the reality of paralysis, or even fully acknowledge it beyond what’s visible.

And visibility, it turns out, is complicated.

The Power—and Limits—of Standing Up

When I first tried ReWalk, I’ll admit it was thrilling.
Being upright again, feeling eye-to-eye with the world, it gave me a lift, emotionally and physically.

But even before it started grinding down my shoulders, I knew: this wasn’t the thing that would change my life.
It was powerful, but it wasn’t practical. Not for how I actually live.

And that’s the part that often gets missed.

What We Actually Want Back

So much of the research, so many of the stories, seem designed for what people think we want.
Walking again. Standing up. Moving a foot or two under our own power.
Those things photograph well. They’re easy to cheer for.

But they’re not always our top priority.

Six-time Olympic gold medalist Amy Van Dyken, injured in 2014, said it bluntly this week on Instagram:

Van Dyken is direct. Maybe even jarring.
But it struck a chord because it’s how so many of us feel, even if some say it differently.

In the SCI community, many of us have priorities that don’t make headlines — things like regulating blood pressure, maintaining skin integrity, managing pain, or restoring private bodily functions that most people take for granted. These challenges might not be as visible, but they deeply shape our quality of life.

Mobility gets the spotlight.
But autonomy, comfort, and dignity? Those are what most of us are really fighting for.

Hope, Tempered by Experience

This isn’t about resenting the science. I’m grateful it exists. I'm hopeful. Always.

But that hope is tempered; by time, by perspective, by experience.
It's shaped by the gap between what’s promised and what actually shifts how we live.

This isn’t to imply that science doesn’t understand the chasm.
In 60 Minutes Overtime, Onward CEO Dave Marver spoke candidly about how aspects of bladder, blood pressure, and sexual function often rank far above walking in what people actually want back to where they were.

But the fact that nuance landed in the bonus content, and not the main broadcast, speaks volumes.

Inspiration Without Infrastructure

To many in the SCI community, moments like this feel like inspiration without infrastructure — symbols without substance. Stories without listening.

That’s what some of us call inspiration porn — stories framed to make others feel good, often at the expense of complexity or context.
It’s rarely ill-intentioned. But it can still miss the mark.

Gert-Jan Oskan walking with brain interface

The Kind of Hope That Matters

To be clear, I believe in progress.
I believe in science.
And I believe in hope — not the performative kind, but the kind that stays when the cameras are off. The kind you build your life around.

That kind of hope listens first.
It asks better questions.
It starts with what actually matters to the people it’s meant to serve.

Progress is good.
But let’s make it practical.
Let’s make it personal.
Let’s make it real.

And maybe, just maybe, let’s stop assuming walking is the only way forward.

Because as Andy Dufresne said in The Shawshank Redemption, a line that has stayed with me through a lot of hard chapters:

“Hope is a good thing, maybe the best of things. And no good thing ever dies.”

I’m still holding onto that.