Dream A Little Different: Part Three

Alternatively Titled: Access

I have unprecedented access.

I have the personal cell phone numbers** of nearly half of my consulting MDs, PhDs, NPs, GCs, CNSs, and RNs. I have a 24 hour a day hotline to the on-call cardiology fellow; whom I have woken up (not totally mirthlessly: that's what you get for telling me I need a defibrillator without first doing all relevant tests) at 3AM before. When I enter the ER I get whisked to a bed almost immediately and am promptly visited by every resident, fellow, attending, and emergency surgeon within spitting distance in the ED. It is VIP treatment, no doubt, but it comes at a cost. No matter how much I strive to stay "boring," to everyone in the ER, I am always interesting.

Moving to the floor doesn't change this. I am greeted by the float nurse, the charge nurse, my current nurse, my old nurse, and again by the fellow I had seen half an hour before when I finally am admitted to a unit.

The next morning I am rounded on by two different teams, but not before first being woken again at 4am for a pregnancy test (HAH), a Metabolic panel, CBC, Tacro level (totally not trough since it's 4am, but who's counting, that other nurse tried to give me day 1 of a brand-new pack of birth control on week 3 of mine, so, clearly accuracy is imperative...), etc. But even before I wake up the wheels have been set in motion by the four texts I sent the previous night to my most trusted advisors (y'all should get jackets, tbh).

Even with all of this access, even with the ability to speak with ten unique opinions throughout the following day, I still felt like quietly silencing the tell-tale monitor, peeling off each of the five EKG leads, carefully pulling out my IV, and then running, as fast as I possibly could, out of that hospital.

So here's a toast to the hard part; the sticky part. The part of me that will not try to find the silver lining. That will not stray away from saying the things that are hard to say. For once I won't even try to be grateful. I will not see the bigger picture or find peace in the consolation prize that is being alive. I will not give into the innate human urge to find something worthwhile under all of this bullshit.

Because that is the one place that I have never allowed myself to be. And maybe if I acknowledge the gravity of the unfairness that is my circumstance I will finally be able to see the pinholes of light on the other side of the hill (Yup, mixing metaphors. Sue me). I will stand at the edge of the Pacific Ocean and yell and yell and yell; until the last breath is pulled from straining lungs through gasping throat housed, reeling, inside a heartbroken body.

All I want. All it would take. Is the chance for me to look someone in the eye and say,

I trusted you. You betrayed me.

On May 21st, 2017 my chest was cut open for the ninth time.

In fairness, the pocket of skin and muscle had laid not entirely undisturbed in those ten intervening years (in some ways, this cut was BAU). But on February 3, 2016 the door had been rather ceremoniously shut for what was thought to be the final time.

I don't know how I get so unlucky as to have the sick heart that was taken from me exchanged for one that is also imperfect by nature. It is not a complication of surgery, it is not anything I did (though, of course, that's the psychological impulse). And, as if no time has passed at all, I leave the glossed hospital walls just as I did two and a half years before: arm in sling, oxy in hand, wires in heart.

When things are too phenomenally ironic, one begins to operate in a state of separatism: the "this isn't happening to me." state.

It's never "Leilani's body is having issues. Leilani's health is out of whack, again." Nope. In my mind, it's "The WBC count is low. The GI system is being thrown completely off because of the medication (not because of Leilani's body's reaction to it)."

"The heart was already broken when we gave it to you."

All I want. All it would take. Is for someone to look me in the eye and say,

I'm sorry.

I don't need another procedure. I don't need another reason to add to the hindsight that makes me question if any of this was the right choice. I don't need another reason to cry.

Sometimes I try to pass off humor to cope: "It's 'more fodder for the book!.'" Others in my life will minimize, "Well, a pacemaker is nothing compared to what you've been through." As if someone else has the authority to ascribe value to my experience. Or better yet, "you've got a safety net now!" as if such an item is a useful tool in a series of tidal waves.

All I want to do is let go; let the waves of betrayal, of deep and clenching sorrow just wash in wave after wave over my whole self. Maybe instead of stepping back each time the tide pulls the water line in closer I should just wade in and let it wash over me and inside of me. Right now it feels like no matter how many providers reach out to pull me aboard: my hands slip further below the surface.

Because I try to move on, get back to my life, but something (always rare and unusual) happens. It is not the device, even the defect, that I fear. I fear the fallout. I see no correlation; no justification that I can proffer to anyone, let alone myself. How do I explain this to those who thought I was being given a new life? A healthy heart? That organ donation was the miracle that I should just shut up and be thankful for? How do I answer? And even with all my access, all my trusted advisors: no one truly can.

In the days following surgery I cannot cross my left arm in front of my body. I can get about 2/3 of the way there before it is blocked by the swelling of an old pocket for a new device.

It feels almost like seeing an old childhood rival decades later. The once piercing squabbles of youth are reduced to "different times." But the stitches of memory haven't quite dissolved and they poke uncomfortably at the edges of regrown scars. The pain is hard to locate; it isn't supposed to be a part of your life now.


**note that I am incredibly moved by this phenomenally caring extension of hands. I do not take lightly whatsoever the duty that I hold to use them sparingly and appropriately. I deeply understand the level of trust instilled in each relationship to allow me to use this personal level of communication.



Currently Listening To: "Hand Covers Bruise" by Trent Reznor and Atticus Ross from The Social Network

Good God. I could watch the intro to The Social Network every day for the rest of my life. It was the first Oscar contender I ever truly cared about. Furthermore, it wasn't the acting ,nor the direction, nor even the writing that I bet on. It was the score.

This was the first feature-length film score for Nine Inch Nails frontman Trent Reznor and second for musician Atticus Ross. It was hailed as a perfect musical illustration of the progression of the mind of its main subject. It was a electronic score that used minimalism, repetition, and electronic elements as both soloists and orchestrations. It was soooooo 2010.

As far as realism in the based-on-a-true-story plot: I kind of think Jesse Eisenberg always plays one character who just happens to live in different situations in different films. True, he is amazing in this, but I'm not sure how much of "Mark" is Eisenberg and how much is Mark. I don't find Mark himself to be that calculating and petty. I find Timberlake's portrayal of Sean Parker a more genuine portrayal. Nevertheless, it could be argued that the real Mark preemptively attempted to rise above the performance of his doppelgänger by inviting his entire immediate staff to see the film when it came out. Therefore, providing some weight to the film's possible accuracy. But, regardless of its realism; this film made for some damn good watchin'.

And look, there is almost nothing in my professional creative life I desire more than to be a Sorkin Player. So I am already indoctrinated into the mold of this film. But it is this piece, in the first 20 seconds, that I begin to understand to understand something new about myself.

Up until this point (being the first time I saw this film), I had lived my entire life in the same town with the same liberal-minded, tech-forward, 2.5-children families. Don't get me wrong, I love my bubble, but that is what it was. So imagine my excitement when I relocate 3,000 miles away and go to see a film largely about my hometown with twenty other Freshman dorm mates.

For, you see, this was "our" film. This was about "us" and "our" tiny town of brilliance ensconced in secrecy and trademarks. This was "our" digital world translated to art for the masses. I remember cheering when Andrew Garfield's character Eduardo proposes moving to "Palo Alto." I was the only one.

I cheered because that's what "we" would do. That's what a young girl from far away thinks one does at the mention of her (actually, very well-known) small town.

But I "woot!"'d without echo. I blurted and then shrank, pretzel-like, back into my seat. I looked to my neighbor, as I lengthened the arms of my intentionally-too-large NYU sweatshirt. The question radiated silently through my grin, "Didn't you hear that? They mentioned "us"!"

She looked at my quizzically before giving a hint of a laugh and turning back to the screen.

That is what this piece is. Solitude disguised in numbers. Isolation amongst a million other lines of people, of commands, of code.

In situ before this scene Mark has just been dumped by his girlfriend. We pan over the Boston streets (ok, Cambridge, and if you were thinking that to begin with then, clearly, you went to Harvard). Mark retreats to his residence hall and, alone again, juxtaposed against a lively courtyard of students sharing their talents (k, but who actually practices violin outside on what is clearly not a school night - I digress...) begins hacking.

The style and progression of this piece perfectly mirrors the comparison that Sorkin is asking us to realize; between Mark and the rest of the world. Mark is alone in a sea of his peers. He has been dumped, like any normal 21 year old. However, instead of drinking away his sorrows with friends, Mark takes his pain a step too far by hacking the school's student index to create a "Hot or Not." His youth is a solitary piano, morose and alone. But his vision, his talent, his pain, is a droning electronic pulse that eclipses the analogue instruments. His life has, until now, been a series of programmed ones and zeros. But now, he is in control.

As always, I highly suggest listening to the entire piece first and then viewing the clip (you'll notice they are in two different keys).


[youtube https://www.youtube.com/watch?v=9SBNCYkSceU&w=560&h=315]


[youtube https://www.youtube.com/watch?v=xXdFJggkjzM&w=560&h=315]