How do you define defiance while living with MS?

Recently, I was asked about the design on the left side of my “Chairborne” banner. A friend from my previous occupation humorously noted that in the original graphic, there’s a skull in the center where the wheelchair now resides.

I pointed out that in my current state, a wheelchair is more appropriate and a skull seems a little macabre for a chronic illness website. He agreed, but asked why I left out the motto that goes with the original emblem: “Nous défions,” which means “we defy” in French. He thought it was the perfect motto for a site like MS News Today.

Maybe my friend is right, but I’m not sure — or not certain enough to include it as part of my banner.

According to some sources, the motto originated with the French resistance during World War II and can also be translated as “we challenge” or “we dare.” Later, a skull, sword, and crossed arrows were added to some U.S. military emblems. I shamelessly modified and adopted it for my column. I didn’t include the motto because I’m of two minds about my defiance.

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What is defiance?

I’m as guilty as the next person of talking or writing about multiple sclerosis (MS) as though it were a malevolent and living entity. That might be useful when trying to describe the disease and how I’m reacting to its symptoms, but MS isn’t alive. Even if it were, I doubt it’d care any more than any other disease-causing organism about how defiant or compliant I am. So does that mean defiance could be meaningless or even harmful in this case?

It certainly has the potential to be. I’ve written several times about blatantly ignoring my early MS symptoms. If denial is part of defiance and leads to a delay in diagnosis and treatment, that’s probably harmful. I think it’s perfectly fine to question these things. In fact, I flat out encourage it. Asking why something is wrong — and what can be done about it — is very different from pretending it’s not wrong.

It turns out there’s an actual disorder that has defiance at its core. It’s called oppositional defiant disorder and includes symptoms like blaming others, being noncompliant, and demonstrating angry or resentful behavior. Sadly, I think there’s an undercurrent of this condition in the rare disease community, and it sometimes taints the perception of defiance. Being defiant doesn’t have to mean constantly searching for something, or someone, to defy. You don’t have to make enemies to be a warrior.

I’ve heard from French speakers that “nous défions” conveys more than simple defiance or daring. It’s been described as an arrogant, almost vulgar, challenge, and I think I like that. I equate it with a protagonist in a movie who makes witty comments or flashes half of a peace sign while at the villain’s mercy.

Arrogance definitely has its drawbacks — I should know — but there’s something admirable in that kind of confident challenge. It might even make being fed to the sharks a little more palatable (a poor but deliberate choice of words).

Maybe that’s what defiance is supposed to be. Maybe confidence is the vital glue that holds it together. Perhaps confidence, in some form, is what makes healthy defiance.

I’m not confident that my MS symptoms won’t worsen. I’m not even sure how today will go. I am confident, though, that I’ll get through it. I guess that means I’m defiant.

Will I go quietly? Will I always be serious about this disease? Will I stop being so stubborn?

Tune in next week for another exciting episode of “Absolutely Not.”

Nous défions.

Note: Multiple Sclerosis News Today 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 provider 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.