Dream a Little Different: Part One

***This post was written on May 13, 2017. The prospective surgery and its aftermath are now a moot point. Nevertheless, this piece was written within the context of its time and bears posting because it also happened, too.***

Alternatively Titled: There.

This is what they want.

Logically, I get it. I'm there. It makes enough sense.

Psychologically, it is 4:45pm, February 2nd, 2016 and I'm desperately trying to get anyone to say no, we're not going forward with this heart, so that I don't have to.

Psychologically, it is being strapped to the bed with 1 inch diameter pipes coming out of my chest, pumps stemming from my pelvis, tubes flopping inconsiderately out of holes above my belly button.

Psychologically, it is a choice, to say no to a scalpel, that I have never, ever been given in my life.

Putting in a defibrillator was never my decision. I had an aborted sudden cardiac arrest. I was medically sedated. I was diagnosed. I was implanted. I was thirteen. You don't get to make decisions for yourself in those circumstances.

I know what it feels like to not make a single decision about my health.

Having the lead replaced wasn't my choice. It was recalled. It was fraying. It would have inappropriately shocked me, perhaps many times. No one consulted me when they flipped the device while replacing the lead, so that for the next seven years I would sometimes have to tuck my ICD out of the way just so I could sleep on my side.

I know what it feels like to not be consulted in my care.

You can read a whole post about how I was listed for transplant.

I know what it feels like to understand that a choice is really not a choice at all.

Installing the ECMO was not (with the best information present at the time) optional. I woke up with nine additional holes in my body with stuff actively coming out of them. I shook violently and constantly with the distorted pressures of blood flowing through my veins under something else's volition. I had been opened and sewn shut, three times, yet I still wasn't existing on my own.

I know what it feels like to be violated.

So now that I'm being told, "We recommend this." for the first real time ever, I want, more than I can articulate, to say no.

Yes, it is somewhat childish that a reason to say no is because I can. But surely, I have earned that, right?

And yeah, sure, it's a "small scar." It is an architectural 2 cm blip next to a 12 inch-long sternotomy. It is vanity that further dissuades me from "yes." I'm a 25-year-old woman, who is damn proud of her zipper and pocket, and who knows that inevitably there will be more scars included simply with the maintenance of a new heart. I'll wear v-neck rompers and continue telling humorously shocked strangers that "it's a botched boob job!" 'till the cows come home, but this palette is already too full of the artwork of some unnamed fellow's sutures. I'm just done. I'd like to be vain, just for a little while.

Because, despite the more information I learn about what has happened to me, I am still so beyond not being over it. I am so far beyond it that I am circling back to it, and I am encircled by it. Health, once more, eclipses the human. And logically, I get it. It's just a recording device. It just sits there and listens. It doesn't deliver therapy. I have just as much chance of dying with it as I do without it.

But psychologically, I'm not there yet.


Currently Listening To: "Crepuscolo Sul Mare (Twilight on the Sea)" by Piero Umilian, originally from La Legge Dei Gangsters and later used in Ocean's Twelve.

I cannot begin to tell you how much I love the Oceans trilogy. While I am all for an all-female film cast, I am actually somewhat disappointed that they made an all-female remake. Put aside the fact that I find it somewhat diminutive that we have to use existing films to remake with women; as if we don't deserve an original storyline so that, if nothing else, we won't be unjustly juxtaposed to the inevitably better original (here's looking at you Ghostbusters). Feminist issues aside, the 2001 version is just so perfectly cast, expertly crafted, deliciously cool. It exists as a salute to the pinnacle of talent of the time and the pure theatrical power of an actual ensemble cast. Ugh. I love it.

What I find most fascinating about this piece of score is that it is not original. Piero Umiliani was a composer whose work ranged from spaghetti westerns to soft core sex films. He was a key influencer of using jazz in film music, particularly during the 1960-70s. Though Umiliani was less well-known than Ennio Morricone, the two were contemporaries.

The use of this song as a stark motif for the push-pull relationship of Rusty (Brad Pitt) and Isabel (Catherine Zeta-Jones) is so present, so on the nose that some might say it over-gratuitously cues the audience in on their affair each time it plays. However, the jump-cut nature of the filming and the sharp almost-to-camera looks the actors give all welcome this kind of abrupt return to sonic motif.

The general editing style of this film that jumps quickly between both cinematographically complex and beautiful mise-en-scene. The shifts of timeline that accompany the editing style pair together as two steadfast racers  panting thirstily at the edge of this rippling piece. We too, the voyeurs, are thrown out of echoing warehouses or cacophonous Vegas casinos and into the pure solitude of a Spanish guitar on an Italian shore.  Listen for it: can you hear the water? Can you see the moonlight?