Health knowledge made personal
Join this community!
› Share page:
Search posts:

How We Do It: Part XXIII in a series

Posted Feb 18 2013 11:00am
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.
Post a comment
Write a comment:

Related Searches