I Raise MS Awareness by Twirling Fire in the Parade of Human Suffering

When February comes to a close each year, the clarion call sounds all over social media to ramp up awareness about multiple sclerosis during the month of March. I always start off by scratching my head at how I can do something different from what I’ve been writing or talking about during the other eleven months of the year. It dawned on me that it isn’t necessarily about coming up with a sexier slogan to grab the public’s attention. The strength of our message can simply lie in the sheer numbers of us bringing the facts of multiple sclerosis en masse to the public. One voice alone is the beginning of self-advocacy, but many voices singing out together in unison and in harmony is the cornerstone of a grass roots movement. The harmonies are being sung by others who suffer a different set of maladies.

I naively assumed that multiple sclerosis had March all to itself. Our rare little nugget is just one out of a dozen health and social issues that will usher in the spring each year.  Here’s the complete list:

  1. Multiple Sclerosis Awareness Month
  2. National Kidney Month
  3. National Nutrition Month
  4. Women's History Month
  5. Irish-American Heritage Month
  6. Endometriosis Awareness Month
  7. National Reading Awareness Month
  8. Music in Our Schools Month
  9. Social Work Month
  10. Colon Cancer Awareness Month
  11. Bleeding Disorders Awareness Month
  12. Hemophilia Awareness Month

But the month of March is sparse in its commemorations compared to October, which has a whopping 39, including National Pit Bull Awareness, International Walk to School Month, and National Bullying Prevention. Hmm...if we gave pit bulls to kids who walk to school, might that prevent bullying?

By contrast, July and August have only two commemorations each, including National Ice Cream Month, Metal Corrosion Awareness, and Digestive Tract Paralysis. Hmm...a pint of Ben & Jerry’s chelating lead-free frozen yogurt might wake up those sluggish tummies.

And last but not least, December’s very few commemorations:

  • National Malena Awareness Month
  • National Unawareness Awareness Month
  • Jesus Appreciation Month

Don’t feel bad, I had to look up malena, too. It's an abnormal bowel movement of black, tarry stools indicating the presence of digested blood. A mundane bodily function like pooping gets a commemorative nod alongside the son of God and the existential paradox of being aware that one is clueless. What should we take away from this absurd juxtaposition?

We could see it not as absurd but as natural. That giving equal emphasis to faith, justice, and physical suffering is a moral imperative and necessity. We all want to be counted, to be understood and validated, feel part of the whole. Whether we poop blood or blue marbles, we all deserve a testimonial because we are sufferers. We suffer because we are alive.

Here are some ways to squawk about, symbolize, act out, cut and paste, and otherwise give a nod to multiple sclerosis:

  • Blow up orange balloons and attach them to the outside of your house/car/boat/bike. Also suitable for tying together and letting go into the air to float high above the trees.
  • Post a social media shout out to urge people to buy SOMETHING ON OUR MINDS, VOL III, an anthology of poetry and nonfiction written by people with multiple sclerosis. But first, read one yourself and then write a review on Amazon.
  • Firemen have a calendar. The Audubon Society has a calendar. Even World War II has a commemorative calendar. Multiple sclerosis probably has one, too, though I haven’t yet found one. Maybe they’re passe now, those 12-month paper flip calendars you attach to the fridge with magnets. I suppose they went out with cathode ray tube monitors. But I want one that shows a person with MS posing provocatively at the top of each page. For instance, June is lying prone on the lawn in front of her power chair after one wheel caught a field stone in the side yard—except she is facing the camera and laughing to let us know she's okay, this kind of thing happens all the time.

If you think you don’t twirl fire in the parade of human suffering, think again. Every time you leave the house, you’re marching for the cause. You register with every person who sees you at the store or bank. I’m convinced that strangers first notice the mobility aid (if we’re using one) and then scan the look on our faces. We don’t have to wear orange to make an impression, but it might make someone ask us what it’s for, and that is a small triumph for educating the public about MS.

I’ll close by sharing my own biggest challenge: Leaving the house. We are having some milder days here in SE Michigan, so I’m pushing myself to get out, to see, and to be seen. It makes me think of the movie AVATAR whenever the Na’vi people greet each other. One looks in the other’s eyes and says: “I see you.” Then the other gazes back and says: “I see you.” Meaning I know you, trust you, I’ve got your back. So I walk through the grocery store with a mug like an open-faced sandwich, wearing an idiotic, unfocused smile. People look at my face and smile when I do that. They see me—maybe as the village idiot, but it’s a start.

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