Monday, February 18, 2013

How We Do It: Part XXIII in a series

Hilton Head, 2010


Own your disaster; make it into a lake, build for it a shrine — not to show your strength but to show your weakness, which is a way of showing that you are yet human, that you are not yet lost. Shine the sign of your struggle into the sky. And then light it up.
Emily Rapp 
Emily Rapp lost her boy Ronan last week. Emily is a gifted writer, and her beautiful boy Ronan was only three. He had been dying, basically, since the day he was born, affllicted with Tay-Sachs, a particularly cruel degenerative disease. I have read Emily's writing for several years and am always stunned by its lyric honesty. I have not lost a child, but I've cared for one whose life is not unlike a baby's, for nearly eighteen years. Sometimes I come here to this blog and wonder if I've written too much. I wonder, sometimes, if I've written too much despair and too much pain. I wonder, all the time, whether I've written the same thing over and over and over again. I shrink from the precious, am embarrassed by the confessional, yet I come back and write, and I write not just here but everywhere, pen to paper, pencil jots in notebooks that lie in shreds. I come here and I go there, I fill things up and let them tip out, the writing out and reading in as essential as breathing. There is love between Sophie and me and there are vast distances. Does she recognize love? a man once asked as he popped peanuts into his mouth, his head tilted. Does she recognize you? the professional asked, her legs crossed carefully at the ankles, her yellow-lined notebook filled with the scratches of her brain. I imagine Sophie to know everything and to know nothing at all and there is great grief in that and inexpressible relief. I imagine that I have owned my disaster and very much built a shrine, a small and tidy one of white tile and cerulean blue, lapped by the ocean and just as easily erased as markings in sand.

19 comments:

  1. Let me ask you another question. How do you do this- how do you continue to stun me with your words over and over again?

    ReplyDelete
  2. My thoughts are with Emily and her family. Her shrine, like yours, is a brilliant light for us to follow, a place where we can honor her and her beautiful child. It is a light in the sky that cannot be extinguished but is instead traveling to places where we cannot keep up, places where there is everything and nothing at all, places that are infinite.

    ReplyDelete
  3. I've said it before, but it bears repeating--this series of writings MUST be a made into a book. They are stunning.

    ReplyDelete
  4. I've been lurking for a little while, drawn in by a profile picture of a lady with kind eyes.
    This post left me sobbing.
    Thank you.

    ReplyDelete
  5. Damn woman, you can write!

    I cannot imagine an answer other than "yes" to the questions you posed about Sophie. With as much love as you all have for her, she must feel it. She must know it.

    ReplyDelete
  6. It's too much this week. Just too much. Other losses, closer to home and more familiar, plus this. I have no lake, no shrine, and I want to hide in the dark.

    ReplyDelete
  7. You are a writer, and you will always write. The combination of you and Emily Rapp here is pure magic. I know the worry about sharing too much darkness, but as the quote says, you share your humanity and not your misery. Because I do not think you are miserable. In the end, you show us hope. It was Martha Beck who said that any artist can take you to hell. You are one of those who shows the way out again. That is what the world will need, time and time again. How you do it, and why.

    ReplyDelete
  8. I like the Martha Beck quote very much. That is what you do for me - over and over again you show the way through. You acknowledge the truth of things, and continue to find the glory. Your writing is so very moving, and touches me at my core.

    ReplyDelete
  9. I think you write just enough to make me come back to read more.

    ReplyDelete
  10. perhaps the greatest joy in life comes from knowing everything and knowing nothing at all. and the greatest gift you give is that you are able to share this with us.

    ReplyDelete
  11. I am sorry for Emily and her family. I have been close to that edge with Maggie many time and peered over into the blackness. I know this - there is a great difference between being close to the edge and going over the edge.

    Don't wonder. Be glad you have this place to write. I am certainly glad you do.

    ReplyDelete
  12. I am sure Sophie can feel your love, last summer I was have really big seizures and was not awake very much but when I felt my Dad and Mom touching my hand I felt their love. It is just a different way of being.

    ReplyDelete
  13. You've never written "too much." We are honored to bear witness and to read your beautiful words.

    ReplyDelete
  14. {Gulp}...{Stifled Gasp}...{Sniffle} You could say it all again a million times over and we'd never tire of your words and sentiments. I know i'm not the only one with an admittedly unquenchable yen for your take on the state of affairs in this world and for updates of you and your family. When interweb access evades me, i hanker for all of it dearly. Your writing is wizardry. Resonant. Enchanting. Damnitanyways.

    ReplyDelete
  15. you and i live in the same realm, have the same thoughts, same worries, similar struggles. i am looking forward to our face to face. xo

    ReplyDelete
  16. You weave meaning with your words. Meaning for yourself, for Sophie, and for the rest of us. I do not denigrate the confessional, or its power, but this thing you do with words, with your life, is so much more.

    ReplyDelete
  17. these belong in a book, this incandescent writing of your life with sophie. i say a book because these moments that reveal the great depth and expanse of your humanity should live forever, and books can do that. yours would. they would not be easily erased as markings in the sand because you write these words deep inside our very souls and we are forever changed by reading them.

    ReplyDelete
  18. Coming late to this (catching up) - just... beautiful, beautiful, beautiful words. Thank you.

    ReplyDelete
  19. I think that the most precious gifts we can give to each other are our most intimate understandings of life. Whether we do that by writing or music or visual arts or cooking or physical touch will always vary, but it is so important for us to express ourselves, ugly and beautiful sentiments alike, in a way that brings us together and helps us to understand each other more fully. Your writing is masterful and heartfelt and touches so many.

    My thoughts are with Emily and her family and I thank you for sharing her brilliant words here.

    ReplyDelete