I hit harder than NMOSD ever can

While my disease lands some punches on me, I've learned to fight back

Jennifer van Amerom avatar

by Jennifer van Amerom |

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Do you ever feel like the punches keep coming? Living with neuromyelitis optica spectrum disorder (NMOSD) can sometimes feel a lot like that. I’m a boxer, stuck in a corner with no way to avoid those vicious and cruel punches landing square in the face. Life, especially one with a rare disease, can be miserable.

When you’re up against the ropes, you really only have two options: fight or surrender. I’m in awe of the NMOSD community and how each patient fights this disease every day.

I have a fond memory of my dad that helps me through my difficult days. Dad worked the night shift for most of my childhood. On the nights I’d hear him come in, I’d sneak downstairs for a hug. On rare occasions, he’d let me stay up to watch some David Letterman or a boxing match. I once asked him why anyone would want to fight for a living, to which he said, “They’re just trying to survive like the rest of us.”

I think about his guidance, especially when I’m trying to push through difficult moments like yet another needle, more NMOSD-related bad news, or medical paperwork for insurance. What I didn’t account for, though, was how I don’t want to just survive life; I want to thrive. Having NMOSD, however, has made that goal more challenging.

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The fight to thrive

NMOSD has complicated every aspect of my adult life. I couldn’t just fall in love and get married; my spouse had to be on board with his partner having an illness. We couldn’t just try for a child and have one; we needed a team of doctors, endless tests, and in vitro fertilization to conceive our daughter. I couldn’t just work hard and climb the corporate ladder; I’ve had to consider my energy output and implement hard limits on the number of hours I work every week.

While life with NMOSD hasn’t been easy, I’m still accomplishing my goals — and I think I’ve figured out the secret.

Instead of being a boxer up against the ropes, I’m a classic children’s toy, an inflatable-clown bop bag. You can hit me hard, NMOSD, but I just come right back up with a smile on my face. Humor and laughter fight my invisible opponent.

Don’t get me wrong; the NMOSD moments hit hard. They’re no laughing matter. But it’s in the ridiculousness of those moments, the I-can’t-believe-this-is-my-life moments, that I find humor.

There’s the moment, for instance, when the nurse attempting to complete my bloodwork sets up the needle on the table in front of me and turns around, only for the needle to roll off the table. She throws it out, completes the entire disinfecting process anew, grabs another needle — and the same thing happens. She’s apologetic, embarrassed, and exasperated, and I think to myself, “Relax, lady. It’s me getting 12 vials of blood taken this morning, not you.”

At times, I run out of stamina. At times, I break down and cry. At times, NMOSD hits when I least expect it, and those moments, when they take you by surprise, can hurt. But then I pull myself together and face this disease without fear. I become that bop-bag clown with an almost deranged smile, screaming to the universe, “Is that all you got?” I’m a tougher opponent than any rare disease.

When NMOSD hits me, I just hit back harder.

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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