My mom’s example of strength still guides me in life with NMOSD
She taught me how to keep moving forward, despite uncertainty
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One of my earliest memories is of my mom balancing what seemed like an impossible load on a bicycle.
Dad needed the car to work out of town, so Mom improvised. She’d hang grocery bags from the handlebars, tell me to climb into the baby seat, and then my younger brother would somehow climb on afterward and sit on my lap. Once everyone and everything were precariously loaded, she’d push the bike forward, take a running start, hop on, and pedal with determination all the way home.
Today, there are probably several safety regulations that would prevent such a feat. But back then, it was simply how we got around. Mom biked us to elementary school, the library, the splash pad, and countless errands in between. Looking back, I’m amazed not only that she managed it, but also that she made it seem effortless.
That was my mother. She was strong long before I understood what strength really meant.
When I was younger, I thought strength looked dramatic — grand accomplishments, heroic moments, impossible victories. My mom taught me otherwise. Strength was showing up every day. It was carrying more than seemed possible. It was finding a way forward when circumstances weren’t ideal. It was doing what needed to be done without complaining about how hard it was.
Over the past few years, as I’ve lived with neuromyelitis optica spectrum disorder (NMOSD), I’ve found myself returning to those lessons again and again.
NMOSD has a way of testing every kind of strength you think you possess. There are physical challenges, certainly. There is pain, fatigue, uncertainty, and the constant awareness that your body may not always cooperate with the plans you’ve made. But there are also emotional challenges: grief for the life you expected, frustration with limitations, and exhaustion from explaining an invisible illness to people who cannot see what you’re carrying.
When I encounter those moments, I often think of my mom on that bicycle. Not because my challenges are the same as hers, but because she demonstrated something that transcends circumstances: resilience. She didn’t waste energy wishing things were different. She focused on what she could do with what she had.
As an NMOSD patient, I face many situations I can’t control. I can’t control every symptom or setback. I can’t guarantee what tomorrow will bring. What I can control is how I respond. I can keep going. I can adapt. I can find another way forward.
That mindset was modeled for me long before I received a diagnosis.
Her strength lives on
Recently, my family said goodbye to my mom after a long and difficult hospital stay. Losing her has been one of the hardest experiences of my life. Grief arrives in waves — sometimes expected, sometimes not. I’m constantly fighting the urge to pick up my phone to call her about a recipe. There are ordinary events that now feel extraordinary because I can’t share them with her.
And yet, even in loss, she continues to teach me.
As I reflect on her life, I realize that her greatest gift wasn’t the things she did for us, but the example she set. She showed her children that strength can be quiet. That courage can look like persistence. That love often manifests as sacrifice and determination.
I miss her deeply. I always will. The sting of her loss is ever-present.
But I also carry her with me.
Every time I choose hope over fear, every time I push through a difficult day, every time I find the courage to adapt to life with NMOSD, I see traces of her influence. The lessons she taught on those bicycle rides didn’t end when I grew up. They became part of who I am.
My mother’s journey has ended, but her strength lives on — in her children, in her grandchildren, and in the values she passed down through a lifetime of example.
For those of us living with chronic illness, strength isn’t about being fearless or unbreakable. It’s about continuing to move forward despite uncertainty.
My mom knew that long before I did. And on the days when NMOSD feels particularly heavy, I picture her pedaling that overloaded bicycle, grocery bags swinging from the handlebars, two kids hanging on, determined to get us home.
Somehow, she always did. And for her, I keep going, too.
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.
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