The first bend I made on my own happened in a moment so ordinary I almost missed it
Part 4 ended with the first bend. Part 5 begins with the moment my body finally remembered how to move on its own.
The First Voluntary Movement
The frustration of not being able to move the bottom half of my leg on my own was overwhelming. It consumed every quiet moment between the waves of pain. My body had the capability now, right? Dr. Gross had given me that. But my mind hadn’t caught up. It felt like shouting into a void, willing a part of myself to respond and getting nothing in return.
Then one day, everything changed.
I was being examined and was asked to move from my wheelchair back onto the bed. I wasn’t thinking about bending. I wasn’t trying to force anything. I was distracted, talking, focused on the logistics of shifting my weight and getting settled.
And then it happened.
My leg moved with me! Not because a machine pushed it, not because someone lifted it, but because I did it. My body and my brain finally connected, quietly, almost accidentally, in the middle of an ordinary moment.
When I realized what had happened, I froze. Then I cried and laughed at the same time, again. It was messy and emotional and absolutely perfect! After twenty‑two years of stillness, that tiny, distracted movement felt like a triumph. It was a breakthrough. A promise that the work I was doing was leading somewhere real.
It was the smallest motion, but it changed everything.
The Rollercoaster Goal
Rehab was long and painful. Every day demanded more from me than the day before, and the only way through was to keep my mind fixed on the things I wanted most if I ever managed to bend again. I had two goals, and the first one was rooted deep in my childhood: I wanted to ride a rollercoaster.
Every summer, my father and I would ride the rollercoaster at the CNE together. It was our tradition, just the two of us. My mom and brother were not rollercoaster fans. Those rides were pure joy: the laughter and the shared thrill of something that felt just a little wild. But by sixth grade, I had already reached my full height of 5’9″, and with a fused knee, I simply didn’t fit anymore. The tradition ended long before I was ready for it to.
When my father passed away when I was seventeen, that loss settled into the space where those memories lived. The idea of riding a rollercoaster again wasn’t just about fun. It was about reclaiming something I had shared with him, something I thought was gone forever.
The first summer after my surgery, my friend and I went to the CNE. I climbed into a rollercoaster seat, something I hadn’t been able to do in decades, and as the ride took off, I screamed, laughed, and cried all at once. It was absolutely perfect.
The Bike Goal and a Revelation About Bravery
The second goal I held onto during rehab was to ride a bike again. As a kid, I practically lived on my bike. It was freedom, independence, and joy all rolled into two wheels. Even after my knee was fused, I still rode. Pedaling with my right leg only and sticking my left leg straight out in front. Kids don’t overthink things; they just find a way to do what they love.
As I got older, things changed. Being a teenager meant that how I did something suddenly mattered just as much as being able to do it at all. Peer pressure has a way of slipping into the smallest corners of your life, even the joyful ones. I started noticing the way my leg stuck straight out when I rode, the way it made me look different, the way it drew eyes. Slowly, almost without realizing it, I stopped riding that way. Not because I couldn’t, but because I didn’t want to stand out. That instinctive, childlike “just find a way” was replaced by the teenage need to blend in.
So, after the surgery, full of hope and determination, I went out and bought myself a brand‑new bike. I rode it once. The moment I felt the wobble of uncertainty, the fear of losing my balance, something in me froze. The confidence I’d had as a child wasn’t there anymore.
I never rode it again, and eventually I gave the bike to my daughter.
That experience sparked a revelation I’ve had many times since: the difference between childhood bravery and adult caution. When you’re a kid, you don’t care if you’re doing something differently from everyone else. You just want to do it. Then you become a teenager, and suddenly it’s all about fitting in. And by the time you’re an adult, that cautious, sensible voice kicks in. We call it maturity, but sometimes it’s really just fear dressed up in grown‑up clothing.
Still, even though I didn’t become a cyclist again, the goal served its purpose. It kept me moving forward. It reminded me of who I had been, and who I was trying to become again. Someone willing to try.
What This Journey Taught Me
Looking back, the rehab was every bit as long, painful, and demanding as I’d been warned. But it was also full of moments that reminded me why I fought so hard for this chance. Every tiny bend, every breakthrough, every scream‑laugh‑cry moment stitched together a story I never thought I’d get to write.
I held onto two goals to pull me through: riding a rollercoaster again and riding a bike again. One I achieved with joy and tears at the CNE, feeling my dad’s presence in every twist and drop. The other taught me something just as valuable, that bravery changes as we grow. As kids, we leap without thinking. As adults, we slow down and measure the risks. Sometimes that’s wisdom, not fear.
Looking back now, I’m struck by how much has changed in the world of juvenile arthritis and chronic illness care. When I was growing up, treatment options were limited and physio was still finding its footing. Biologics weren’t available yet, and whole‑health care, the kind that considers the body, mind, and daily life together, wasn’t part of the conversation. Today, kids and adults are stepping into a medical landscape shaped by decades of progress, research, and most importantly, compassion. The tools are better, the understanding is deeper, and the path forward is wider than it used to be.
And if I managed to do all of this with the limited options I had, I want anyone newly diagnosed to know that there is real hope in what exists now. Not the shiny, unrealistic kind. The grounded kind that comes from better medicine, better support, and a community that finally sees the whole person. Limits aren’t fixed the way they once were. Progress doesn’t erase the hard days, but it does make room for possibility, for movement, and for a future that isn’t defined by what you can’t do.
But the biggest lesson for me wasn’t about rides or bikes. It was about the power of persistence, the importance of self‑advocacy, and the people who show up when life asks more of us than we think we can give. My family and my friends. They carried me through the moments when my mind didn’t believe what my body could now do.
This journey wasn’t just about bending a knee. It was about reclaiming possibility. It was about learning that even after decades of stillness, movement, in every sense of the word, is still possible.
And that realization has stayed with me ever since.
And the gifts kept coming. A year after the surgery, my daughter and I travelled through Europe. Several cities in England, Paris, Amsterdam and Germany. Hauling suitcases, climbing endless stairs, catching trains, wandering cobblestone streets. I’m not saying I wouldn’t have done it before the surgery, but it was undeniably more comfortable after. I moved through those cities with a freedom I hadn’t felt since childhood, and every step reminded me of how far I’d come.
And the most unexpected gift of all? My right knee didn’t require a replacement until almost twenty years later. All that work, all that preparation, and all that determination. It bought me time. Precious time. And that alone made every step of this journey worth it.
I didn’t know what the end of this part of the journey would look like, only that I wanted to reach it. Joy, fear, uncertainty. They all traveled with me. But standing here now, looking out at a horizon I once thought I’d never touch again, I feel something steadier. Not triumph, exactly. More like a quiet, earned peace. A reminder that some chapters don’t close with fanfare, but with a deep breath and the simple truth that I made it through.
Author’s Note:
Anyone who has been a long-term patient knows that the people behind the scenes matter just as much as the people in the operating room. Martina, Dr. Gross’s Assistant, has been one of those people for me. Organized, kind, and always making sure things don’t fall through the cracks. Thank you Martina. Your presence made a real difference.
A reflection on life after the takedown can be read here.
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FAQ
Why does this part of the story matter?
Because this is the moment everything changed. Part 5 is where effort meets instinct. Where my body and brain finally reconnect after decades of silence. It’s the chapter that proves healing isn’t always loud or dramatic; sometimes it arrives quietly, in the middle of an ordinary moment, and rewrites everything I thought I knew about my own limits.
Why couldn’t I move my leg voluntarily at first, even though the bend was physically possible?
Voluntary movement returned only when my brain finally reopened that long‑archived pathway. The breakthrough didn’t come from trying harder. It came from distraction, from not forcing it, from letting my body remember on its own.
Why did the first voluntary movement feel so emotional?
Because it wasn’t just a physical shift, it was a reclaiming. That tiny, distracted motion carried twenty‑two years of hope, frustration, and determination. It was proof that the work I’d been doing was leading somewhere real. When a moment holds that much history, the reaction is never simple. It’s absolutely perfect.
Why was riding a rollercoaster such an important goal?
It wasn’t about thrill or adrenaline. It was about reclaiming a tradition I shared with my dad. One that ended long before I was ready. Riding again meant stepping back into a memory I thought was gone forever. It was joy, grief, and healing all at once, and it marked a milestone that went far beyond physical ability.
Why was riding a bike again harder than I expected?
Because childhood bravery and adult caution aren’t the same thing. As a kid, I found a way to ride despite the fusion. I didn’t care how it looked. As a teenager, the pressure to blend in crept in. As an adult, the fear of falling took over. The bike wasn’t a failure; it was a reminder that bravery evolves, and sometimes the goal teaches you something even if you don’t reach it.
What did this part of the journey teach me?
That persistence matters. That self‑advocacy matters. That support matters. And that movement, physical, emotional, and forward‑looking, is still possible even after decades of stillness. Part 5 is the chapter where possibility becomes real.