In October of last year, the New York Times op-ed page published one of the most profoundly moving and searingly heartbreaking essays I've ever read. It was written by a woman named Emily Rapp, who is slowly watching her young son die of Tay-Sachs disease -- and to say that it left me in tears, an utterly devastated mess, would be an almost farcical understatement. It was, quite simply, an extraordinary piece of writing -- one I doubt I'll soon forget -- that related with quiet dignity a suffering most parents couldn't even imagine nor would they want to.
I'd highly recommend reading it, if you haven't already -- then read the latest piece by Ms. Rapp in today's Salon. In it, she expands on the initial essay, revealing in almost too-personal detail -- with a tone that's equal parts desperate and reverent, the kind of thing only a soul laid completely bare can express -- how she's continuing to cope as her son nears the end and what she's learned about life as she lives in the shadow of certain death and unrelenting grief. It's agonizing, and yet undeniably life-affirming -- and it's no coincidence that her determination to open herself up completely through writing about her experience is what makes both her words and how they've helped her find her humanity and a measure of peace so awesomely powerful.
This is my favorite excerpt:
"The world can be a horrible place at times, but we don’t have to participate in this, we don’t have to harden our hearts as we’re taught and told to do, in order to survive or be sexy or attractive lovers or perfect parents or interesting people. We do not have to make ourselves into mysterious gifts, waiting to be chosen or read or understood by those who will earn us, unwrap our secrets, and then what? We can be something more authentic, and speak from a different place, a different planet. This is why I like being a writer, because what it demands is both simple and incredibly hard. To be a human being. Does anyone even know what that means anymore? Why don’t we allow for mess? Why are we so afraid of it? What do we expect from the veils we pull down over our eyes, our minds, our hearts? How can we possibly connect if we never let people see what we truly are and what it would take to make us free? Now, when I can’t fake a single emotion I don’t feel (or at least not for long), I wonder how I’ve lived this long being any other way. Maybe it’s that I haven’t really been living, and that now I am like Adam, like Eve, my feet still wet from being newly created, awkwardly learning how to walk on dry land."
Trust me -- read this.
Salon: Someone To Hold Me/7.11.12