September 13

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visible . . . invisible

According to a family story, when I was learning how to talk, one of my earliest full sentences was "No see me." I wasn't comfortable with attention being given to me - being told I was cute; that a dress I was wearing was pretty; that my shoes were nice...

Compliments were countered with, "No see me."

When my nephew visited a couple weeks ago one of the first things he said was "You look good!" It's an innocent enough comment for most, even flattering to many, but when you live with chronic pain it actually feels loaded. Inwardly there's a "yeah but..." answer unfolding. Which is what? a defense, an explanation, a justification for being up and dressed?! Does it matter that it feels like a lie when I know what I'm feeling doesn't match what is seen on the outside? That extra pain medication props me up, and days of recovery are needed after extra efforts are made? This is what occurs for many with what is termed "Invisible Chronic Illness".

A few months ago I signed up for one of Bloggers Unite's events, which brings bloggers from all over the world together to highlight and bring attention to a particular issue, all at once, on the same date. I've done several others in the past, and thought that this one would be a breeze -

*my* issue even.

There are many conditions that fall into this category - from diabetes, and arthritis, to fibromyalgia and chronic fatigue; auto immune diseases, some cancers, degenerative disc disease, obesity - the list goes on and on. Many people live with daily pain and or debilitating fatigue every day. So this is a week to bring awareness to this fact.

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But I'm a little uncomfortable with this form of visibility - is Visible Chronic Illness the label I want to wear?! Not really!

My goal is to have the illness or pain part of my life have little more weight than other areas that I tend to daily. Pretending there is no pain when there is gives it even more power over me than it deserves, while giving in to it completely will do the same. Finding the balance, by noting the level and continually adjusting my activity accordingly, as best I can, the way you would change outdoor plans in bad weather, is what I strive to do. I am beyond fortunate, and grateful, for the circumstances which allow me the freedom to listen to and tend to my needs in this way.

I hope all that makes sense! Quite honestly, this past week has been one of my worst in a pretty long time, and I am having difficulty concentrating fully while sitting and typing - forming words while the fire within burns in distraction. Before I go though, I wanted to thank Jaliya deeply for the moving post she wrote about the 47th Hexagram, in part honoring me, and sharing my images on her beautiful Quotable I Ching blog here.

And many thanks to you all - my words cannot express the depth of feeling I have for you, my visiting friends who leave me with such kind reminders that what I do matters more than I know, that all that we do creates ripples far beyond what any of us ever truly realize. Much peace and love, Karin