December 2006, about two months after my vulvodynia started, I found myself trying not to tear up at "White Christmas" as I watched the orchestra rehearse for its holiday show.
I had been working for the orchestra for about 10 months at that point. It hadn't been great. Then my vulvodynia started.
One of my earliest panics about vulvodynia was that I felt like I couldn't sense things the same way anymore. When I put on my headphones and shut my eyes, I didn't hear the music in the same way. It's like my entire body had been a tuning fork, or a bell, or a guitar string, and vulvodynia was the finger stifling it.
It had been raining all fall, and I had come to associate rain with vulvodynia. I had seen Guns N' Roses in concert just after Thanksgiving and screamed "November Rain" back at Axl as almost a plea to him, God Axl, or whatever god, to fix my pain. By the time it started snowing, I thought, my vulvodynia would be gone. It couldn't stick around that long.
Now, two weeks later, the weather too warm for snow, the orchestra, lit in blue, dipped into "White Christmas" and snowflakes twirled across the stage and onto the walls. Perhaps for the first time, I noticed what a beautiful melody it is. So I tried to listen. And it was like I was listening through a wall.
It had come to seem impossible to do or feel anything with pure abandon. But that hadn't always been true.
Since 2003, I had participated in National Novel Writing Month (NaNoWriMo), in which you try to write 50,000 words in November. It doesn't matter how much it sucks. Just write. Because everyone says they're going to write a novel someday, but they don't.
November 5, 2006, about a month after my vulvodynia started and five days into NaNoWriMo, I finally put down the first words of my novel that year.
I was tired of holding my heart in. First it was one temporary hand was all it took, a light touch every once in a while when it would pulse too big and press against my skin. A light touch with spread fingers, hearing it thump, thump against the upper part of my palm, thump. Two thumps, sometimes three, and it was back in retreat.
That novel became a vulvodynia narrative:
The necessity of holding it in didn’t grow by thump, now four thumps, now five, now sixteen – no, it was one day, I woke up, I sat up, my heart tilted forward and pulled at my neck skin, hard enough to make it feel sunburned, ready to snap like elastic. I gasped and caught it with my palm and guided it back to its place, but to stand up, to move, to shower, I needed my hand there. ... Walk out the door, to work, to shop, to the newspaper, as if breathlessly in love with every sight (hand upon chest, gasping at beauty) (heart rattling under palm, no longer rigged).
I walked around every day with a hand to my chest, feeling my heart move in its soft, raisin way up against my layers of skin, nodding itself as I might bend to pick something up, the newspaper to read of crimes, or to pluck a leaf off my shoe. ... As I stretched and reached for things, as I answered the phone and threw scrap in the trash, I felt my heart topple softly, never eagerly but always pitched over square by one of my jostles, and then pitched back the other way by another.
And then, straight from my job at the orchestra:
My raisin heart, dried, sinuous, with many folds, thumping as it did, always a hair behind the metronome. A pit still shapely inside a hollowed fruit, rattling, sinews cut, pit rattling free but still inside the skin. I felt it thump, thump, its every thump, every, even at night, and my mind spoke alongside, thump, thump. It was a rhythm, thump, just a hair off the metronome, always behind, just a hair, so that I had to tap my foot to make sure it was off, and move my free hand through the four-four pattern to see just where the heart fell in its errant beat. My skin would itch to get it to land on the downbeat as it should. I would walk faster, I would breathe harder, I would worry, I would spook, I would hold my breath and jump and huff and puff. It remained always behind, and I knew its every beat, was that lagging rhythm’s captive, leaning forward into my walk as if advancing my body in time would bring the thump back in step, up to tempo, no longer almost jazzy in its lateness, but on time, a proper heart of strict, even rhythm.
When I look at these two events side by side -- starting a novel a month after my vulvodynia began, and tearing up at not being able to feel "White Christmas" in the same way I used to -- I realize that they are of two different outlooks on life. In the concert hall, listening to the orchestra, I was a victim, and I had had something stolen from me. Writing my novel, I was using the new world I was in to create something I never would have created otherwise.
I've been both people over and over since then. I still feel robbed of my senses, and of everything else vulvodynia takes from you. But I'm also trying to live in this new world. It's still a world.
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