One Month of MS Awareness Isn’t Enough

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by Ed Tobias |

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I’m changing my mind about MS Awareness Month — at least a little — thanks to “31 Days of MS.”

Whether it’s an awareness month or a week, or whether it’s for MS or disabilities in general, I’ve never been a big fan of these types of initiatives. But this year, on every day in March, Multiple Sclerosis News Today media platforms have presented “31 Days of MS,” which are short essays written either by people with MS or those connected to it.

The project has filled March with inspiration. I’m a tough guy to inspire, but it’s hard not to be encouraged by people like Tatiana Andjelic (Day 3), who writes, “I laughed a lot when I was diagnosed with multiple sclerosis in March 2019.” She added that she can “simultaneously be real about the downsides while seeing the light that exists.”

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’31 Days of MS’ inspires even me

Alexios Touloupis (Day 7) reveals that a few years after he was diagnosed at age 16, he started using his full name, Alexios, rather than Alexi. “I knew that guy — what he knew, how he lived — was done,” Alexios writes. He considers the name change a rebirth, and getting right to the point, he concludes that, “Life’s too short for headache-inducing crap.”

People have called Lissette Mares (Day 19) an “ironman” (although “ironwoman” may be more appropriate). This young woman has gone from having a “hard time going up stairs and crying in my college dorm room because I couldn’t shower or change myself to running across the finish line at a race years later.”

While Lissette didn’t choose to have MS, she says, “I do have the choice about what I do with it and how I decide to fight it. The options I have are limitless.”  

These are just a handful of the stories in the “31 Days of MS” project. (Read all of them here.) Each story is individualized like our disease. These folks have inspired me, and I’ll bet they’ll inspire you, too. They’ve certainly raised a lot of positive vibes on the MS News Today Facebook page and our other social media sites.

Are we preaching to the choir?

Here’s the rub, though: I think that for the most part, we are only inspiring ourselves, which is great, but we need to do more. We need to spread this inspiration outside the MS community. But how do we do that? Should we all run out and get an MS tattoo?

I think this conundrum is why I’ve never been a fan of awareness months.

What else can we do to make every month an MS Awareness Month? The National Multiple Sclerosis Society has some ideas. Do you have any others? Please share in the comments below. You’re also invited to visit my personal blog at www.themswire.com.


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.

Comments

Tom Anderson avatar

Tom Anderson

Hello Ed- I read your posts the most because I get to respond if I want to. I like to think of angles that might rattle the reader towards a new more accurate, useful or different understanding of the topic. However, this time not so much? I'm wondering, why do we need to make others "aware", anyway? Aware of what, specifically? How I felt, reacted, what I lost, and the big mystery- what I gained (?). Many different angles are given in "The 31 Days". I look at them mostly on how they shed accuracy to the newly diagnosed in 5 paragraphs or less.

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Ed Tobias avatar

Ed Tobias

Hi Tom -

Thanks for rattling things a bit, again. I guess people with MS have as many views of themselves as their are variations of our illness. In my column I try to present an accurate picture of that variety and what our lives are like but I also try to encourage people to learn to dance in the rain, rather than hiding from the storm. That's what, I think, the people writing in "31 Days" are trying to do and their positivity encouraged me to highlight some of them in this column.

Ed

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