Aging with a Disability: The Part Nobody Prepares You For

When people think about a spinal cord injury, they think about the moment everything changes.

They think about the accident. The hospital. Learning how to live a completely different life.

What they don’t think about is what happens 30 years later.

Because the truth is, a spinal cord injury isn’t a one-time event. It’s something that keeps evolving. And aging with it brings a whole new set of challenges that no one really prepares you for.

For a long time, I had things figured out—at least as much as you can. I had systems that worked. Routines that gave me some level of independence. I knew how to manage my body, even if it didn’t function the way most people’s do.

But over the past year especially, that’s started to change.

And that’s been one of the hardest parts—not the injury itself, but realizing that what worked for decades suddenly doesn’t anymore.

One of the biggest examples of that has been my bladder.

For nearly 30 years, I was able to manage things with intermittent catheterization. It wasn’t perfect, but it gave me a sense of control. I could plan my day. I could go out without constantly worrying about accidents.

Then, as I got older, my body changed.

My bladder started spasming more. I lost that predictability. I found myself dealing with accidents more and more often, until it got to the point where I could barely go an hour without an issue.

I tried Botox injections, and for a while, they gave me another stretch of independence. But eventually, even that stopped working.

So I had to make a choice: adapt again.

I moved to a Foley catheter, which meant living with a bag attached to my leg at all times. It wasn’t ideal—it changed how I dressed, how I moved through the world—but it gave me something I hadn’t had in a while: a little bit of freedom. I could stay out longer. I could visit friends without constantly worrying.

But that came with trade-offs too. Because with long-term use, it can cause damage. And eventually, it did.

So I adapted again. I opted for a suprapubic catheter—a surgical alternative that bypasses the urethra altogether. On paper, it felt like the next right step.

But reality didn’t go the way I hoped. Within a day, there were complications. A blood clot blocked the catheter, and suddenly I was back where I started—only this time, scared and unsure of what was going wrong. That turned into multiple ER visits over the following months, dealing with issues I never expected when I made the decision.

Eventually, I made the difficult call to reverse course and go back to the Foley. And now I’m here—dealing with the consequences of that choice too, with damage that makes even that solution imperfect.

So once again, I’m facing another decision. Another adjustment. Another version of “this works…until it doesn’t.” That’s the part no one tells you.

And it’s not just one system in your body. It’s everything.

At some point over the past year, I developed a wound on my ankle—and I didn’t even know it was there. I couldn’t feel it, and I couldn’t easily see it. By the time it was noticed, it had already become something that wouldn’t heal the way a normal wound should.

Since then, it’s been a cycle: improvement, infection, setbacks, and now a kind of frustrating standstill where no one really has answers.

Then came a blister on my heel that turned into something much worse. And somehow, I even lost a toenail without knowing how it happened.

It sounds almost unbelievable, but this is part of the reality—when you can’t feel half your body, things can go wrong without warning. And when your body doesn’t heal the way it used to, small issues can turn into long-term problems.

And it’s not just the parts of my body I can’t feel—it’s the parts I rely on the most.

After years of lifting myself in and out of the car, transferring in and out of bed, and pushing a wheelchair every day, my shoulders have taken a beating. I’ve already had surgery on one of them, and now my other shoulder is starting to hurt in ways that feel all too familiar. So now, I’m trying to get ahead of it—working out, trying to lose weight, doing what I can to avoid another surgery.

Because when your arms are your mobility, your independence depends on them in a completely different way.

So now, part of my routine includes weekly wound care appointments, multiple visits from home health nurses, and constantly managing something that may or may not improve.

And as if navigating all of that wasn’t enough, my body is also going through something entirely different at the same time.

I’m in perimenopause.

Which means on top of everything else, I’m dealing with brain fog that makes it hard to focus or even finish a thought sometimes. My hair is thinning and falling out in ways that feel completely out of my control. And maybe the hardest part to explain is this underlying feeling of just…not feeling like myself. It’s like my body is shifting in ways I don’t recognize, on top of a body I already had to learn how to live in once before.

What makes all of this harder isn’t just the physical side of it. It’s the mental shift.

This year marked 30 years since my accident. And instead of feeling like I’ve mastered this life, I’ve felt more uncertain than I have in a long time.

There’s something heavy about realizing that aging doesn’t just bring the same challenges as everyone else—it layers new ones on top of an already complicated body.

It’s exhausting to constantly adapt. To make decisions without clear answers. To wonder what’s coming next.

And I’d be lying if I said it hasn’t taken a toll on my mental health.

There have been days where I didn’t want to get out of bed. Days where everything felt like too much. Even trying to adjust my medication to help ended up making things worse before I realized what was happening.

It’s a lot.

But here’s the thing I keep coming back to:

Even with all of this, my life isn’t just this. If you’ve seen me on social media, you’ve probably seen the concerts, the trips, the moments where I’m smiling and fully present. Those things are real. They matter. They’re part of my life too.

What you don’t see is everything that exists alongside those moments. The planning. The sometimes ER visits. The setbacks. The frustration. The days that don’t make it onto a highlight reel.

Both things are true at the same time.

I don’t have a neat ending for this.

I don’t have everything figured out, and I don’t know what the next 10 or 20 years will look like in a body that continues to change.

But I do know this: I’m not done living my life just because it’s getting harder. I’m not going to wait until things are perfect—because they may never be.

And even on the days where it feels overwhelming, I’m still here. Still adapting. Still figuring it out as I go.

That may not be the version of resilience people like to talk about.

But it’s real.