Saturday, June 1, 2013

Hydrating Nixie, A Symbol of Hope for Sjogren's Syndrome Sufferers

A few months ago Julia Oleinik, writer of Reasonably Well initiated a challenge to create a piece of art that would become a symbol of hope for those suffering with Sjogren's Syndrome. 

Julia wrote: 
I've felt for a very long time that we sjoggies need a mascot, or a symbol, or something that represents us. Something that is immediately recognizable to other sjoggies. Something that needs no words. Something that identifies one sjoggie to another instantly.

I gave the idea thought. Lots of thought. We sort of really need something. Isn't the thought of a super hero of sorts swooping in to save the day a lovely thought? More than entering a contest, I was really interested in exploring what my icon of hope might look like. 

So I shuffled down to my son's bedroom and flopped onto his bed to rest while my foggy brain sorted ideas out. 

"There is an art contest of sorts, a challenge to create a character for people with Sjogren's. I'm having a hard time coming up with something. Maybe you can help me?" I said hanging half on and half off of his bed. 

"Sure." he said as he grabbed his sketch pad and Sharpie. 

I pounced at his willingness to help. I sat myself up as he spun around from his desk waiting for me to dictate some ideas to scribble. 

"Ok, I was thinking like a droplet of water...because we're so depleted of moisture?" 

He drew an upside down drop and added eyes, arms and mouth. He added some blue squiggles around the border. 

"Oh my gosh. That's it." I said as he looked up and smiled. 

"It needs a cape. Every super hero needs a cape...and boots. It needs super hero boots." I dictated to him. 

He added a red cape and little black super hero boots to the little thing. He looked up from his sketch pad as if prodding me to add more. 

"You know what? Maybe it should be a girl. Since 9 out of 10 patients are women maybe more would relate if it was a girl." I said as he was nodding his head as if he already knew that. 

He added a little bow on her head and gave her pretty long eyelashes. 

There she was. She was a crude little sketch but she was ready to take on what ever heist the Sjogren's Syndrome Robber could attempt. All she needed was a name for the people to cry out when she was needed. 

We looked up names that derived from water. We chose Nixie, a German name meaning little water sprite.

I am proud to introduce you to Hydrating Nixie! 

"Tah Dah!"

We entered little Nixie into the contest for fun. What Cole and I created was special to me though. To me it really was a cute little creation that was already inspiring hope. One little droplet can make all the difference to a person coping with the dehydrating effects of Sjogren's Syndrome.

Cole and I are over the moon excited that our Hydrating Nixie won the Creativity Challenge! 

She's sitting beside my laptop cheering me on right now. She helps me to not be so resentful of continuous eye dropping. She actually makes me a little thirsty, which is a good thing because my body can use the extra water. She's been cheering me up while I'm battling pain, fatigue and brain fog. 

If you are a fellow Sjogren's Syndrome sufferer, I wish you wellness today. Nixie sends misty, dewy comfort your way. 

I challenge others to create your own symbol of hope to help pick you up. It's an interesting exercise to  plunge into. What would it look like? How would it help you? Ask and you shall receive. 

Please visit Julia's blog post here to view the other Creativity Challenge Finalists. Amazing artistic expressions of hope.


  1. Yay Nixie! I can't wait to see what she looks like in 3D after being made into a felted sculpture. I'm told by D#2 that she's almost done.


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