In the midst of an ugly American presidential post-election, I am actively looking for inspiration to distract me from this mess. And man, was I lucky! There’s a gal who’s living with NMO, or neuromyelitis optica who sure has her head on straight!
My God, I am inspired by her! She’s been hit with just about everything this disease could throw at her and yet, she’s still smiling!
Let me explain… NMO is a rare demyelinating disease, kind of like relapsing MS but not really. In NMO, the effects of each relapse are cumulative.
Now, I don’t know about you, but the last time I checked, my legs and arms worked. I can walk, bust a move on the dance floor, and throw down a fabulous dinner party for 10 without thinking about it! Well…okay, maybe with some planning. But my point is, that I think it’s easy to take our health for granted—whether we’re athletes or couch potatoes glued to our TV screens.
But when we’re faced with an attack that robs us of our mobility and independence, we’re suddenly faced with multiple terrors:
- Who will take care of me?
- Will the pins and needles feeling in my legs morph into complete numbness?!
- Will I ever walk again?
And after that, because it could easily progress, you may wonder: will I lose the ability to feed myself because my hands might go numb? Who will love me? How can I possibly afford the astronomical care even though there is no current FDA-approved disease-modifying drug?!
But this gal just keeps on ticking like the Energizer Bunny!
She’s in her early 50s and now a paraplegic. Her symptoms started when she was 25 with unexplained bouts of pneumonia. This went on for YEARS—yes, years! Then she experienced a variety of odd symptoms but doctors weren’t able to connect the dots! I mean, who would EVER connect a demyelinating disease with a symptom like itching?! Seriously!
Somehow, she has managed to hold it together—her spirit for life!
Instead of giving up, she has become her own advocate and actively writes about her mysterious NMO in her blog to help other.
