It has been difficult for me to write publicly about my life these past couple of years. When blindsided by a potentially terminal illness, my life quickly morphed into me, gazing through a tear-streaked window at a far less anecdote-friendly landscape. Talking about the ins, outs, and others of my sickly body makes me sound like every other bedpan malcontent. Blah blah, my ass hurts...BLAH. It's fucking boring to write and boring to read and from what I've seen happen to others, it is just as often a bid for attention as it is a letter to whomever about the suck of living with sick pukery. No thanks. I'd rather just write it down in private and not become *Tina the Talking Tumor...a Happy Cancer Mascot...twirling the cane of Juicy Decrepitude. Or...the Worst Thing Imaginable: becoming addicted to the attention one receives as a result of their illness. A Münchausen mainliner who speaks of lists of symptoms but whose only accomplishment is as a mitotic sprinter in the Cancer Olympics. Maladies marching out of mouths like goose stepping soldiers, spilling in straight lines and invading the boundaries of every nearby ear they can find. Battle cry, "Cancer Nazi Ear Fuck...incoming!!!"
No thanks. Goodbye. I sure do thank you for the huckleberry pie.
Also, the medication(s) I take can make me inarticulate and, as I've oft described myself of late, a couch manatee. Tired and flailing weakly and motivated to do little more than sleep and couch.
For serious...nothing externally noteworthy HAPPENS to people who are in the Cancer Trenches. Not in any way we can properly articulate until we manage to survive long enough to forget the burpy aftertaste of the force-fed Cancer Kool-Aid on our weary little tongues.
The Cancer Experience is all about inner life, both literally and metaphorically. Reflect. Rejoice. Regret. Rewind. When things get ugly and you're damned close to drawing a flatline in the sand, you realize that you'd eat the chubby toes off a glowing newborn baby for just one more heartbreaking love affair...or yes, even the delicious darkness of lamenty regret. Ohhhh, when you're alone, laying in a dark, beeping hospital room, those emotional memory shadows glide all over you like a swarm of velvet jellyfish.
Oh LIFE. Dirty, filthy life. Please, PLEASE let me make it out of this sterile hospital jungle of tubes and blinking lights so that I may toil in your glorious, muddy fields once again.
Ahem. So to be fair, I've come to understand that part of the need to drench others with details about the effects of being a Sicky isn't always about the attention. It's an attempt to reinsert oneself into The Matrix. In other words, an attempt to return to the blissful reality of the vagueness of mortality instead of the alternative...which is a cold, skeletal hand constantly tapping, "Don't get too comfortable..." in Morse code on your shoulder.
Within this understanding, I think I've reached the point where I can talk about where and what I am....without tearfully mourning who I WAS or symptom listing. I can explain things without speaking solely in the language of list. So, to the joy of my one to two loyal readers...I'm going to write here more often. I may not have something to say that enlightens or even informs...but I'll do my best to entertain. Like a romantic comedy. With more cussing than kissing.
So, I'm doing my taxes as well as filling out a new round of forms for yet another surgery. And shuffling through this pre-burial mound of boring details, I thought, hey...this is WAS now. I have perspective. And I think I will write about it and naked(v.) the past few years out to the public.
When I pictured myself involved in this world of disease, I was really looking forward to the romance of a bloody lace hanky into which I coughed and gasped. "No, no,' I'd say, 'I'll be fine."
I'd be all breathy and noble. Onlookers would admire my bravery. There'd be quiet murmurs of admiration and down-turned eyes. Oh yeah. It'd be full-on Wuthering Heights.
Pfft. Forms and boxes to check and sign-here drudgery. I generate
more paperwork than a small business. This is such
tedium for someone who is supposed to be all noble and sick.
As a child in a Lorde-esque torn up town, I dreamed of being a secret agent. Ok, a Space secret agent, sort of a cross between Han Solo and Evelyn Salt. I'd be a hardass with an attitude. A Bitch who doesn't blink when she shoots...but who secretly has a Heart of Gold. I would get captured and be escorted into a room where a generic henchman would whip the hood off my head (they always make you wear a hood when they manhandle you into the interrogation room) to reveal a random, smirky, Cut Cookie Authority fondling a thick folder marked "dossier." Agent Cookie tossers the folder condescendingly so that it slides across the shiny table, an insensate, cardboard sinistro that knows me better than I know myself.
Secret Agent life seemed far more attainable than my other goal: to have machine parts that made me **Harder, Better, Faster, Stronger.
Fast forward...and I do kind of have a dossier now. Except it's not a thick file. It's a very large crate full of health records. Last year, I did my best to simply ignore them because I had a good excuse. I was recovering from surgeries, radiation, chemotherapy, heart failure...aaaand I need not go on. This really isn't about what's WRONG with me or what was or will be carved into my person. It's really about the weirdness of it all. And what I've become. A new kind of romance.
This year...well heck. Already with one surgery under my belt, I'm heading in for another in a couple of weeks. An upgrade to previously installed hardware. A very, very fancy piece of work that, among other things, is more or less a walking life-support system . With a fucking PASSWORD. No shit. I was warned that people could potentially hack my life-support system. Wowzers. That's something else. I've finally achieved one of the fantasy lives I lived as a kid: I am part robot.
But one of the weirdest and most unexpected silver linings of Serious Sick is the conscious physicality of it all. Other than having a rather...ahem...adventurous sex life, my body didn't ground me or provide me with much of a noticeable connection to the rest of the world. In fact, I used it to connect with other people. Now, I'm in it. Ghost in the Machine, baby. I live in a very damaged meat monastery that is constantly under attack. Defending this structure for the past three years has really made me feel much more tied to it. Connected with it. Less in need of another hand touching it to make me aware of it.
What I really love about that is that it is the Robot parts of me that are primarily responsible for making the smushy parts recognizable (in a blinky-eyed awareness kind of way.) When you see and feel machines inside you that are keeping you alive and giving other people and other machines access to your FUCKING HEARTBEAT...it is...paradoxically the least and most life affirming state of being I've ever experienced. Literally...I'm cognizant of my own existence within the DMZ twixt two binary opposites (flesh and machine). COOL.
So. Ok. I live outside the Matrix. But I still have ports and machine parts and am constantly nipping in and out of the Grand Illusion. And I think I'm finally ok enough with that to send reports from time to time from my place in existence (however long that lasts.)
And I know I sound rather sluggish and sloppy. This is my first time back in the field and my sentence Witch Crating is a bit distorted. I'm still collecting myself.
*I'd actually like to see this as an amorphous Plush Toy.
**It is no accident that I cite Daft Punk here. They have provided a profound narrative that gives my new Machine Fortified Heart a Killer Set of Beats.
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Schizophelia Jones
