"ABORIGINE", 1996, 40" x 60", m/m

"ABORIGINE", 1996, 40" x 60", m/m


It is a strange thing to expose one’s self as I have done in the video I just posted to this site.

I say strange because after I went very public with the film clip, I felt the big “V” word: VULNERABLE!!!

Oh, my God, she says.. people can see how I walk and almost cry and pull it together and don’t have it all figured out and the hardware I use and my home and my shiny skin and… and…….

One of the gifts I have been blessed with in this lifetime has been the ‘whatever-it-is’ that allows me to speak up in a way that helps others really have a better experience of a situation they may never face themselves but find it valuable to know something about.

I have been called up to the plate a number of times to speak when others couldn’t or wouldn’t or chose not to.

After I posted the video yesterday, the little girl in me starts in: “Well… who are you to think you have something of value to say?”

So, I told her that I am just a woman dealing with MS who is tired of hiding and wants to make a difference in some way and the way I think I can do that is to tell the truth.

I know people recognize the truth when it is on the table and I think it gives others permission to follow suit.

Away…away from the cultural template of ‘OK-ness.”

It is a messy, messy business..this living- a- life- thing we are doing.

And yet- how utterly riveting the drama is! The whole darn thing is just plain entertaining when you get your pesky self out of the way.


7 Responses to “Exposure”

  1. Suejan on December 29th, 2009

    That is very good Im writing book[done a t-shirt] all profit goes to MS and Autism Youve inspired me as if I think about it all think Im washing dirty linen in public

  2. S Rose on December 29th, 2009

    remember that this vulnerability is a GIFT…

  3. Laurene on December 29th, 2009

    I love you. And I admire, not just your courage, but that you know to do this, and listen to the knowing. Thank you for sharing this with me. Thanks for putting the truth on the table. It is so rare.

  4. Carol Aten on December 29th, 2009

    I like you shiny 🙂

  5. SEKINO KA on December 30th, 2009

    To see a blog WHEELCHAIR KAMIKAZE , I could visit here.
    In your art work, primitive parts and sensitive parts are coexisting. Usually these two elements are contradictory. But with your hands, a miracle happened.
    I watched your movie. I expect you transform your inner psychological world into your art works.

  6. Mitch on December 30th, 2009


    What a beautiful video. Thanks for taking the risk to share your vulnerability like that.

    My body is in a similar situation as yours. I’ve had PPMS since 2001, and am in a wheelchair full time.

    You pose an interesting question: “What all can you take away and still have the essence of a thing?” I suppose this is a question all of us who are in decline are asking ourselves, but you ask it so eloquently.

    Based on your approach to life’s challenges, I’d say that your essence will survive for a very, very long time- no matter how much your body fails.

    Best of luck in your journey.


  7. Dorothyanne Brown on December 30th, 2009

    Love your video, and your postings. I’m on the same journey, with MS that was supposed to be RRMS but which has started a long spiralling trip downwards, unstoppable, unfair.
    But you are so right – about having “needs” and being surprised by what they are – about liking yourself better now.
    I was never needy, never took anything from people, was almost too independent. This disease is teaching me, painfully, how to accept help, how to ask for it.
    Thanks for the reading. Best wishes…

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