Suddenly, seemingly out of nowhere, I found a sense of empowerment

It was one of those stressful moments when I simply did what needed to be done. My mother had been visiting us in the city for a couple of weeks, and I was sending her home on the train. Parking here in downtown Toronto is nearly impossible, so my husband was double-parked outside the train station, waiting for me as I escorted my mom to her gate. Worried that he was holding up traffic, I broke into a light jog through Union Station to get back to the car, and that’s when it happened.

Suddenly, my body felt good — not just OK, but genuinely healthy. The light jog became a faster jog, and then, without thinking, a full sprint. I zig-zagged through the other patrons and their luggage, raced up a ramp, and dodged a few small children. I kept waiting for my legs to seize up or scream in protest, but the pain never came. Instead, they felt strong, capable, and almost eager. Before I could stop myself, I shouted, “YES!” — a burst of pure exhilaration that echoed throughout the station. For once, I didn’t care who heard me.

Despite living with regular back pain and leg numbness from my neuromyelitis optica spectrum disorder (NMOSD), I was running for the first time in years.

There was something almost cinematic about it: My body surprised me in the best possible way, especially considering that I wasn’t chasing a goal, a finish line, or even thinking about myself at all. I was just trying to get back to my family, and somehow, in the middle of that ordinary rush, I stumbled into a reminder of my own strength.

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Starting, stopping, and starting again

It’s no secret that starting a workout routine requires motivation, so having to stop because of NMOSD and then try to start again can feel deeply frustrating. I used to love running. I started on a treadmill in high school and eventually worked my way up to 5‑ and 10‑kilometer races with colleagues and, later, with my family. I loved the meditation of it: one foot in front of the other, my breath syncing with a playlist I had agonized over until it was perfect. I even have a tattoo on my right foot to remind myself to always put the “right” foot forward in life, no matter how difficult things become.

But when NMOSD took that ability away from me, I quietly mourned what had once been possible. I tucked my race medals into the bottom of my underwear drawer and stopped buying expensive running shoes, replacing them with “sensible” footwear that felt more like a concession than a choice.

And yet, after that unexpected moment in Union Station — after feeling my body surge forward in a way I hadn’t felt in years — I can’t help but imagine what might still be possible. Could I take up running again? Could my spine tolerate the steady rhythm of pavement underfoot? Could the weight I’ve gained from steroids be replaced with strength and muscle that might carry me forward again?

I can’t help but wonder if my fear of disappointment is what’s been holding me back. NMOSD has been unkind to me these last couple of years, and now that I’m finally in remission, I find myself tiptoeing around my own body. I don’t want to provoke anything, almost as if I’m negotiating with a foreign intruder that has taken up residence inside me; it’s unpredictable, volatile, and always listening.

Since that unexpected run, I’ve caught myself drifting into daydreams of who I used to be and how my body once felt: energized, responsive, and alive. Those memories return in flashes, in the form of early morning runs, the rhythmic thud of my shoes on pavement, the quiet pride of finishing a race. They feel both distant and strangely close, like a language I once spoke fluently but haven’t practiced in years.

And now, with this small but undeniable glimpse of what my body might still be capable of, I’m left balancing hope and caution. It’s a delicate place to stand, but for the first time in a long while, hope feels like something I’m allowed to feel.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.