Probing my spirituality in life with chronic illness and hardship

I’ve never been great at fitting neatly into so-called boxes, especially spiritual ones. I grew up exposed to many religions, from Jehovah’s Witnesses to Seventh-day Adventists. I even begged my mom to send me to Catholic school for a period during elementary school, and dragged my younger brother along.

In the summertime, I attended several youth group programs with friends. I absorbed it all like a kid wandering through a cosmic food court. But even with all that exposure, no single label has ever felt just right.

Still, despite not belonging to any one tradition, I’ve always believed in something — a higher power, a presence, a quiet hum behind the chaos. Then I got sick.

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Neuromyelitis optica spectrum disorder (NMOSD) has a way of rearranging life like a toddler with a box of crayons: messy, unpredictable, and uninterested in plans. When NMOSD hit, my relationship with God cracked right down the middle. I couldn’t understand how something so cruel and relentless could be allowed to happen.

People love to say, “You’re never given more than you can handle,” but I’ve always found that declaration to be suspiciously optimistic. I’ve had days — weeks, even — when NMOSD felt like far more than I could handle. There were times when the pain, fear, and uncertainty were stacked so high it felt like I was being buried underneath it all. In those moments, I fell out with God. Hard.

But here’s the strange thing: Even when I was angry and felt abandoned, I still found myself praying. It wasn’t the polished, poetic kind of prayer you hear in the movies. It was more like, “OK, if anyone is listening, I need help. Now would be great.”

I always feel a little silly doing it, like I’m talking to a cosmic voicemail. Yet when things get rough, I catch myself doing it anyway. Maybe it’s instinct, hope, or both.

My belief in guardian angels complicates matters further. I know it sounds whimsical and perhaps even childish. But I can’t ignore the number of times something has happened that felt like a sign: a near miss that shouldn’t have been a miss; a sudden sense of calm when everything was falling apart; a message or moment that arrives with suspiciously perfect timing.

Every time it happens, I push the thought away. “It’s coincidence,” I tell myself. “You’re imagining it.” And then it’ll happen again, and again, and again. At some point, I start to wonder if someone is trying to get my attention.

I also play a game with myself, one I’ve never discussed until now. It started after my dad passed away at a time when NMOSD had knocked the wind out of me. I was desperate for something, anything, that felt like connection. I’ll turn on the radio and ask if my dad is listening. Then I’ll flip to a random station. Often, the first words I’ll hear is something uncanny like, “Hello,” by Adele, a lyric that feels like an answer, or even a jingle that somehow fits the moment a little too well. Then, I’ll ask more questions and it’ll suddenly feel like I’m having a conversation that’s pieced together with random responses.

I know it’s not real in the literal sense. I’m not claiming to have cracked some supernatural communication code. But in those moments, when NMOSD feels too heavy or sharp, it gives me comfort. It lets me imagine my dad’s voice again, that he’s still watching over me, and that I’m not carrying all this alone.

Maybe that’s the point. Perhaps spirituality isn’t always about truth with a capital “T.” Maybe it’s about the rituals we create to survive the unbearable, or the tiny threads that tether us to the people we’ve lost, even when we know we’re the ones doing the weaving.

Living with NMOSD has forced me to rethink what spirituality means. To me, it’s not about certainty or having the right label or rituals, but rather connection to something bigger, to the people who love me, and to the quiet moments when I feel held even if I can’t explain why. It’s about acknowledging that I’ve been brought to my knees more times than I can count, and yet somehow, I’m still here, still fighting, and still finding reasons to laugh and to believe.

Maybe faith isn’t about having all the answers. Perhaps it’s about simply surviving the questions.

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.