Monday, April 2, 2012

The Meanwhile Dance

Every now and then I pick up one of my favorite books that address living with a chronic illness and just page through it; I notice where the smudges, coffee stains, and earmarked pages are because.......those are the goodie pages. The best pages of the book. The pages that I return to time and time again to renew my understanding or lift my spirits.

Today, the book in my hand is a well-worn copy of A Body Out of Balance -- Understanding and Treating Sjogren's Syndrome by Ruth Fremes, M.A. and Nancy Carterton, M.D., FACR. 

There's a wealth of useful and insightful information in this book. But when I lift the cover, the book always falls open to a grubby page that contains only these words:

I get up.
I walk....
I fall down.
Meanwhile, I keep dancing. 

--- Hillel 
Ahhh. Yes. 

Twelve words. So succinct but so true: A reminder to me that my life does indeed contain challenges, but even while falling down the dancing still continues. 

I first read this poem several years ago while in the midst of a monster flare of autoimmune activity. As is typical flare mode for me, I was in bed grumpily reading any and everything that I could find. A Body Out of Balance happened to be sitting on my bedside table, unopened and unread. So I blew the dust off the cover and began to read. I impatiently flipped through the introduction and forward of the book, looking for chapter One. Yes, yes....title page.....acknowledgements......publication junk.....dedication......table of contents.....::Good grief, just get to the good stuff already!::.....and then there was this almost blank page with those few words. As I read and absorbed their meaning, I smiled for the first time that day. 

I let the book drop onto my lap and wondered how I could dance while still in a flare. What a concept! What a great way to change my lousy perspective! Even though I had read and repeated other platitudes that are meant to encourage, this one struck me as being so simple but so authentic. It truly inspired me to look for joy in every day. 

All these years later, I've discovered several ways to dance in the face of my disability. Luckily for John and everyone else who sees me daily, my dances these days aren't literal ones. 

Hoo boy. Wouldn't be pretty. 

No, my dances have to take other forms. I feel as though I am dancing when I grab my camera and click away: jitterbugging?

Friends and family gather into one big happy mob of chatter and food and fun: swing dancing?  

The comfortable and easy camaraderie found in exchanges with other sjoggies: waltzing?

And then there's writing this blog. I wonder to what kind of dancing that could be compared. Let's see. What other forms are there? Hm. Foxtrot? Nah. Too formulaic. My writing is anything but structured. Um. Maybe the twist? Pfft. Too dated. That's SO yesterday. 

Ok. I've got it. My blog dances as though it's the dance that someone always does at a big old-fashioned wedding reception, or after they've had a few adult beverages, or preferably both: The one where the person dancing just does whatever they feel like. They fling their arms around, they follow the beat......or not.....they dance with a partner.....or not.....or they dance like my brother-in-law, who invents his own dances like the Alligator: you throw yourself down belly-first on the ground and try to mimic alligator jaw action with your arms. Or the Surfer: similar to the Alligator except you coerce some small person to stand on your back with arms outstretched. 

Yep. That's how this blog dances. I never know what I will feel like saying when my fingers hit the computer keyboard. 

C'mon everyone! Let's do the Alligator! Or, wait. How about the Julia's Still Sitting Around In Her Jammies and Drinking Coffee at Noon dance? 

Oh, yeah. That's one of my favorites. Start the music.
Snoopy and Charlie Brown found here.  


Anonymous said...

Sometimes we must force ourselves to keep dancing, but it's always worth it. With the warm midwest weather, my dance of the hour as been Waltz of the Flowers....I lose myself in my flower garden...a little harder getting up and down, but fun while I'm there!

Anonymous said...

I need to find this book.
And you're right we should not give up.