Life with NMOSD is a game I never asked to play, but keep winning
This disease is like chess, checkers, and snakes and ladders, played simultaneously
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Living with neuromyelitis optica spectrum disorder (NMOSD) often feels like I’ve been dropped into a lifelong board game tournament without warning, training, or even a rule book. I’ll be 45 next week, that age where life itself becomes a complicated mix of caregiving, worrying about aging parents, supporting friends through unexpected illnesses, and occasionally being blindsided by loss. And through all of it, NMOSD sits beside me like an unpredictable opponent, reshaping how I move through the world.
Over time, I’ve realized that NMOSD isn’t just a condition, it’s a game. Not a fun one, mind you. More like a mashup of chess, checkers, and snakes and ladders, played simultaneously on the same board — blindfolded.
The strategy game I never wanted to master
NMOSD is chess at its most unforgiving. Every move matters. Every decision has consequences. And the stakes are always high.
When my loved ones get sick, I find myself slipping into strategist mode because chronic illness has trained me to think 10 steps ahead. I’m the one suggesting a PICC line when someone is facing weeks of IV treatments. I’m the one who knows that gabapentin helps nerve pain, that steroids come with mood swings and insomnia, and that morphine, while sometimes necessary, can cloud judgment and leave a person shaky and disoriented.
Chess teaches you to anticipate threats before they appear. NMOSD taught me that long before I ever touched a board.
It’s why I coach people through MRIs like a seasoned grandmaster: Close your eyes before the table moves. Focus on your breathing. Pretend you’re meditating in a very loud, very expensive washing machine. These are the kinds of tricks you only learn through experience, and I’ve had more MRIs than I can count.
Simple moves, hard realities
But NMOSD isn’t all strategy and complexity. Some days, it’s checkers — straightforward, repetitive, and exhausting in its simplicity. Wake up. Assess symptoms. Adjust plans. Rest. Try again tomorrow.
Checkers is a game of endurance. You move forward one square at a time, hoping you don’t get jumped by fatigue, nerve pain, or vision issues. And when life throws curveballs, like a parent’s sudden hospitalization or a friend’s frightening diagnosis, you keep moving anyway, because you’ve learned how to function even when your body is staging a rebellion.
This is where empathy becomes my superpower. I know what long hospital stays feel like. I know how demoralizing bad hospital food can be. So, when I visit loved ones, I bring real meals in Tupperware — food with flavor, comfort, and warmth. It’s a small gesture, but in the checkers-game-reality of illness, small gestures matter.
The game that feels most like life
And then there’s snakes and ladders — the game that best captures the emotional chaos of NMOSD.
One day, you’re climbing a ladder: stable symptoms, good energy, maybe even a moment where you forget you’re sick. Then suddenly, without warning, you hit a snake. A flare. A relapse. A new symptom. A setback that sends you sliding back to a place you thought you’d left behind.
Snakes and ladders is a game of luck, but living with NMOSD has taught me that resilience is the real win. You climb again. You slide again. You climb again. You learn to celebrate the ladders and survive the snakes.
And when the people I love face their own snakes, diagnoses, treatments, and fears, I can sit with them in a way others can’t. I know how to ask specialists the right questions, so they partner with you instead of talking at you. I know how to translate medical jargon into human language. I know how to be calm in rooms where fear is loud.
The unexpected gift of playing all 3 games
NMOSD has forced me to become strategic, patient, empathetic, and adaptable. It’s made me a better advocate, a better caregiver, and a better friend. I wouldn’t choose this condition — no one would — but I can acknowledge the strange, unexpected strengths it’s given me.
Life is still unpredictable. People I love still get sick. The world still throws snakes at me when I least expect it. But I’ve learned how to play this game of life. And I’ve learned how to help others play theirs.
In chess, checkers, and snakes and ladders, the goal is always the same: Keep moving. Keep trying. Keep showing up. And that’s exactly what I do.
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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