Monday, September 14

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.
click on badge to go to site
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


  1. One of my friends here in Australia lives with chronic pain. He should be dead, really. He had a terrible workplace accident that's left him unable to work, sleep, breathe or do anything for a decent length of time without great pain.

    I've seen how it can disable a person. I've also had enough relatively painful injuries to be able to imagine living with such a thing every day.

    But you do. And he does. And the miracle is that you're alive and somehow treading that very fine line.

    You know what? Even though you might not feel great, other people don't see you that way. They don't see your pain, and as much as that can be hard to live with, it can also be a blessing, right?

    I mean, they see you as a whole person. A person who makes pretty pictures, beautiful art. And a person who, despite what you live with (and no one can imagine what its like, not really), you do carry on. And you do make those efforts.

    And yes, it does cost you. But then, that is the line you walk.

    I do feel empathy for you and for my friend. But I do not pity you. I tip my hat instead, for your ability to not lose the plot, and in the face of everything you deal with, to live bravely and bring beauty to the world.

  2. Karin the way you conduct your life and the way you deal with your pain is an amazing lesson to us all. The images you create in your journal pages stay in my mind long after I have visited your blog. They imprint the lesson I am learning on my mind. You really have no idea just how much of an impression you make on me. Thank you.

    May the pain you are dealing with today fade quickly.

  3. I empathise - I've been living with chronic pain (and fibromyalgia/arthritis) since 1992... and some days I feel like that's my only label.

    You art is beautiful.

    All we can do is what we can.

    Keep pluggin' on, you hear?!

  4. You look good to me. Very good. Beautiful, in fact. In spite of the fires in your body and the huge challenge living in that pain-filled body, I see you and your spirit as so filled with brilliant light and a deep earthy strength. You have work to do here Karin, and you find a way to do it. You inspire me and I am so thankful to witness your beauty, your art and your loving soul. Yes, we see you ! We can't help it, you shine so bright.
    Much love and peace back to you, beautiful Karin.

  5. we are allowed to have days and even weeks where we are working to get to a place where we can work or function again.
    I understand and it is so true that what you do creates ripples and your creative spirit touches all of us. we are so grateful to you for that! this piece is so beautiful and I see the balance ...I am balanced is one of my mantras....xoxo amico italiano!

  6. Two words: Love you xoxo

    More words: I'm going to check out that site you refer to. There are so many of us who live with "invisible pain" ... and "invisible illness" ...

    Have to run -- hubby wants the PC ... Bless xoxoxoxoxoxoxoxoxo

  7. Wow, you gave me words for the balance I try to adjusting your plans for bad weather. Perfect...thanks!

  8. Karin,
    All I can say is your words are perfect..There are so many of us who live with certain pains..You stand up and give us hope.
    Thank you my friend,

  9. this image i love, very much... xo

  10. You have created many ripples my dear friend. Many ripples.

    This is an outstanding post in many ways. Your painting, your words, your call to what so many of us suffer, and mention of our dear Jaliya.

    Thank you dear friend and I am so sorry that you are feeling so ill this week.

    I do hope that you got to enjoy your nephew.

    Love Renee xoxo

  11. wishing for you
    the inner sunshine
    that you give to us each
    time we look at your beautiful art
    wishing for you
    the strength
    that you inspire to all who read
    your honest words
    wishing for you
    the chances to create
    the art that creates
    enough ripples to move an ocean tide
    wishing for you
    the love
    in your heart to be one with the love in my heart...

  12. thank you Svasti, yeah, last thing i'd want is pity! and yes, there are blessings in being seen as not ill or in pain. That is really appreciated. Ideally is to not be judged either way - well/unwell, strong/weak, and instead just see each other as living loving beings moving through the world, knowing everyone suffers, everyone triumphs... wishing peace to your friend. xo

    Thank you so much Robyn, your support here stays with me. xox

    Hi Caity, wishing you pain and label free days!

    Thank you Kim, you help me learn how to take compliments!! xox

    Hey Cat, so true! refueling time for the body and soul. so glad our ripples have met!

    thanks Patti - i know you know.

    Hey Jaliya, love you, too - and thank you xox

    You're welcome Melissa!

    Hi Katelen, thank you, and you are welcome! xo

    thanks Lynne :)

    thank you Renee, queen of ripples! & yes, we did have a good visit. xox

    hi jennifer, thank you for these beautiful words and your heartful message. love you, k

  13. Visible...invisible ...
    Ce que l'on voit , est ce la vérité ?
    Saint Exupéry n'a t il pas écrit que l'important est invisible pour les yeux ?


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