Thursday, August 21, 2014

open letter to emily rapp

Dear Emily,

When I was going through some dark times a few years ago, I read a couple of your essays about slowly losing your son Ronan to Tay-Sachs online. At the time, when I was grieving the loss of much-wanted, miscarried twins, I devoured your writing greedily and gratefully. My experience was one part catharsis, one part relief that It could always be worse. I couldn’t hear such statements from my caring but baffled friends who didn’t get why something as common as a miscarriage should flatten my identity and shatter my sense of safety in the world. But I could hear it from someone who was living out everyone’s worst nightmare.

When I picked up your book in Vroman’s last weekend, I paused. Would reading it—as I’d wanted to since it came out—be indulging a kind of grief porn? It could always be worse. Would it ward off the evil spirits I still feared surrounded my fate, or would it invite them in?

Since my 2011 miscarriage, I’ve had the time and opportunity to ask nearly all of the questions you ask in The Still Point of the Turning World, which I’m now halfway through. Since 2011, things did get worse, then worse again, then better; at times I have squirmed under the world’s At least I’m not her gaze, and I’ve wanted to shake them, or the imagined them, and explain that my life isn’t better or worse than theirs so much as it is better and worse.

The questions: What is luck? What is quality of life? What is life? Is defeating death the ultimate accomplishment? (Spoiler alert: no.) What is time? What is meaning? What is probability?

Redhead and book.
One of the many passages I marked is the one where you write about having rare red hair, a rare birth defect, a rare eye problem, a relatively rare (benign) heart irregularity and a child with a rare disease caused by even rarer origins (not Ashkenazi Jewish genes but Moroccan ones you didn’t even know you had).

I’ve grappled with a fear that I’m a chronic ten-percenter. About ten percent of the population is queer. About ten percent is left-handed. I’m both. I got breast cancer at 35 because of a rare gene mutation (BRCA-2, which is also common among Ashkenazi Jews, but came to me via my shiksa mom, not my half-Jewish dad, whom I can only blame for my big nose and curly hair). The twins I lost were identical, my doctor murmuring, One in a thousand. I survived—am surviving, am trying every day to survive, am trying to make my survival mean something, and knocking hard on wood always—because I am lucky (whatever luck is). But I have, by the most optimistic estimates, a ten percent chance of recurrence. If I’m always in the ten percent, what does this mean for me?

Love is for everyone.
Of course, we are both smart, educated, middle class white Americans born to loving parents, which makes us both lucky, if prone to self-destructive ambition when paired with our freakishness. (And I can’t help but note that when you are in the depths of despair, you turn to Thomas Mann and I turn to My Strange Addiction and other TLC fare. So I aspire even as I read about your most confounding moments, which led you to shun a certain kind of aspiration.) I find kinship in how you exile the American (human?) obsession with the future. I know that you know—as I know, sporadically, in my better moments—that God and love and joy are not to be found in plans and ambitions and writing fellowships, even though I doubt either of us will ever be totally content with just watching beautiful sunsets.

I read your book this week as I waited for the results of my every-four-months cancer blood test. I held it with me in the waiting room to remind me of this, the most important passage I’ve encountered so far:

Ronan helped teach me a lesson I had long been resisting: this world belongs to everyone. We all have a place in it, no matter how long we live and no matter what we look like, how we move or don’t move, how we exist. What matters is that we lived.

I needed to know that if I got bumped into the terminal category, if I couldn’t look forward to adopting a child let alone watching one grow up, the world was still for me. I had no idea how I might manage to face my friends with babies—whom I can face now only with great effort—my friends with lifetimes to write that book, build that house, visit that country. But in this alternate stage 4 universe, I could, thanks to you and a shitload of therapy and more informal philosophical counseling, imagine living with dying.

I’ve always been self-aware and empathic, which are good qualities for a writer, but which have had the side effect of making me overly aware of my “place.” As a kid, I knew which popular kids I shouldn’t even try to talk to and which I might make into at least casual say-hi-in-the-hallway friends. I knew the adult rhetoric that no one was better than anyone else, but I also knew, as all kids do, that it was bullshit.

Except that it’s not. The world is for everyone. This has environmental and socio-political implications that we should pay attention to.

But in the waiting room at City of Hope yesterday, I clutched your book and repeated to myself that The world is for me.

My tests were clear. I have that feeling of relief and clean-slated-ness that is the unique territory of the anxious and doom-shadowed. Because I’m lucky. Because I have insurance and good doctors and the ability to take care of myself. But the world is for me not because I have but because I am, for however long I am.



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