Friday, June 18, 2010

Confession: Snapshots From the Whole Picture


I think I have to acknowledge something finally. My avoidance of it here has written me into a corner, made me into a character I cannot sustain. Right now it is, and recently has been, such a large part of my life that editing it out left me with swiss cheese story boards, gap-toothed puzzle pieces that will never fit together. 
It’s something I’ve put into words only once from the safe distance of a fictional narrative, so I’m asking for leniency if I fail to articulate compellingly, or at least in a way that doesn’t end up reeking of every self-pitying “sick people” illumination I’ve read. If I fail, let this post be buried and replaced with jokes and extended metaphors, easily tagged tales of anecdotal insignificance...remember those when you see the pink crosshairs on your screen.  
I’m sick. Diagnosed, filed and case numbered, body penned in the autoimmune/neurological/sorry-we-just-don’t-have-a-cure-for-you zoo. I etched the vocabulary to categorize it on the inside of my mouth years ago so I wouldn't forget, as if that were an issue. It reads like beat poetry in chant: Chronic. Progressive. Degenerative. Post-viral, cyclical, et al. Non-transmittable, thankfully. “Life-threatening” maybe at some point. Not tomorrow or the next day. The major symptoms are mostly managed. The little ones are dealt with daily in the most unobtrusive ways we can devise. Most of it blends into the scenery. 


There's a picture of me drinking martinis with my mom in the backyard one summer, IV jammed in the hand not holding the glass. You notice the liquor before the saline; the bag's just another set piece, more laundry dangling on the clothes line. It's been this way 8 years, but the last two years have been different...the last two have been about time. Feeling like there’s not enough of it. Wondering what to do with it. Recognizing I force resolutions and timelines on people because my clock hands finger minutes differently. 
Lately I feel reduced to numbers. Viral titers. Bacterial levels. Cell counts. Electrolyte balances. Blood pressures. Dosages. 1mg, 3 mg, 50mg. 1g twice daily, 2tsp once daily, two packets at night only. 500cc’s out? 1lt back in. 10 days of antibiotics, 21-day cycles, 36-page reports. Helvetica typeface calender dates pulled out for fresh appointments. Everything is numbers. It might be why I always try to make love with my words. 
Parts of it have threaded so casually into the fabric of my life it’s like it is supposed to be there. Like how blood work records make me remember events which had nothing to do with sickness; my sterile paper print-outs trigger memories like photos albums. “My virals were _____ in August 2008...the month Alex and I went to Connecticut for our anniversary. It rained that day at the winery.” I smell the rain, oak barrels, grapes. Taste chocolate-cherry port, suck on phantom tannins. Then wonder what ever happened to that bottle we stashed away. A full, tactile memory of an unmarred weekend, fished out of the pool of experience by numbers baited on a barbed diagnosis code.   
But parts of it I will not allow to assimilate. Hundreds of dollars of cosmetics paint over whatever can be; I blend grey flesh into a pink glow so healthy you’d think I was born pretty. I cover scars, herx reactions, IV bruises, any surface sign of abnormality, hiding them with specifically tailored clothing, scarves, oversized jewelry. I fuss with the pieces all night, check every reflective surface making sure the costume’s on right. This is war paint, this is armor. This is my choice to identify as anything but a patient. 

I fuck like a whore in heat on my back, my ass, or folded in half, wrapped around the front of partners like a papoose, sometimes lowered down from above. I lap at them until their eyes roll back just so they’ll never turn me over, never take me from behind...never see the marks on my back and shoulders from where the meds make me break out in hives. I don't want to waste energy worrying if the've noticed, wondering what they think.

“I always forget you’re sick,” an ex-lover told me recently. “I’d never have known if you didn’t tell me.”  
And I do tell. It’s no secret. Anyone in direct proximity knows. A choice few know what it really looks like. A smaller number help me live with it day to day. Usually I bury it and most days I can hide it; when I’m sickest, I retreat until I’m better. For people out of the inner circle of care, the retreating comes off as many things its not; for me, it is all about isolation. Self-imposed quarantine makes sure the normal things that comprise a life cannot be infected by the infection. If too many people see, it spreads. You cannot uninfect perception.
What’s odd is that I’ll talk about it freely if asked, to the extent that I know how. I’m sure I talk too much about it, sometimes. But I find it hard to write about. To me it’s not something readable. Too hard to make funny, too Lifetime TV. Lands with a thud on 20Something Bloggers. **NEW SUBJECT: Are you afraid you’re going to die young?** Mostly, though, it has a way of hijacking what I want to do when I write, which is to entertain, elucidate, verbally masturbate. Tell a good story. Examine how I feel emotionally, so I can stop thinking about what hurts physically. The rough content's carefully extrapolated, censored by the source. 
But it is in many ways the root of this whole blog. Especially that one etched qualifier: “progressive.” It resonates more than “incurable,” nags more than “chronic,” is more vulgar than "degenerative." It is a one-word incantation that alters my sense of time, skews the scale on which everything must be balanced. The panicked need to collect experiences, to cram as much in as possible, to choose to feel emotions most people should protect themselves from just to have learned the whole spectrum in time...all of that lives here. This blog is, in its own way, a covert shrine to it, the place I watch the half of me that wants to settle down bare-knuckle brawl the part that that’s terrified it will miss something if I do.
Please don’t get me wrong. This is a brooding kind of post, cryptic, rambling, frustrated in this moment, out of remission, scared. I know I am lucky. I’m generally happy. Blessings: My degeneration is slow and can be hidden most of the time. It doesn’t keep me, at this point, from getting into experience most pieces of ordinary l need.
I no longer remember what the point of this post is. I guess I was tired of writing about everything except what’s on my mind, which lately has been this, and tired of focusing every choice I’ve made through a homogenized lens that doesn’t quite project the whole picture. Why do you do the shit you do? I'm not sure...but this is a factor.
This is a little bit closer to the whole picture.



Photos taken by Alex, during treatment session, February 2009.

19 comments:

Anonymous said...

Thank you for your honesty - it's not easy laying everything bare. I wish you well.

Krystal said...

blogs are for writing what is on your mind, it's good that you wrote this, stopped censoring yourself, etc...keep your head up, which it sounds like you are doing

Out of Sync said...

This post was fantastic, the way you weave words is so immersive. I wish you all the best.

inflammatory writ said...

Oh, sweetie. Giant hugs to you. But we don't love you because you're a character. We love you because you're honest. Just keep writing whatever your reality is. Blog titles don't mean much anyway. My writ is hardly inflammatory. Most of the time it's just emo.

<3

Skelly said...

"You cannot uninfect perception." Such a smart statement. Keep working cause you're awesome.

Kandace said...

you don't have to censor yourself here since i'm sure many of us would loyally read & care either way, but I do understand. Thank you for sharing this with us. And as always, it was very well written. I loved the way you wrote it even though I didn't love that it was something that exists for you to write.

Hannah Miet said...
This comment has been removed by a blog administrator.
Hannah Miet said...

You're one brave bitch.

I'm glad you are writing about your illness. I never read you for your dating stories. It wasn't the pitch of The Hitch List alone. In fact, honestly, if you weren't such a compelling voice narrating the hallways and dive bars and streetcorners of the dating world, I would never have become so addicted to your writing. I hate dating blogs. I hate blogs about topics. What I like is whole people who don't feel the need to be clean cut, to sum themselves up in 140 characters. Quirky girl with father issues. 30-something looking to find a husband but only finding assholes. I hate that shit. People are complex. And you, you may be even more complex than most.

Your honesty is inspiring. Your voice is compelling. Your story is sad and beautiful. Can you hear me drum tapping your battle call?

Keep truckin'.

Hipstercrite said...

Wow. You just inspired me to be more open. However, lately I don't feel like I know who I am anymore. I truly feel like a ghost creeping around. I can not find the words to articulate how I feel or what I think, so to read something this, so pure and honest....well....

Hannah Miet said...

didn't think that first comment went through. Oops.

Polly Syllabick said...

we're all ghost, Hipster. Polterzeitgeisters. Be honest. We love your openness.

Meghan said...

This is my favorite post of yours, possibly ever. The honesty is there. It makes it real.

Truth is art.

Juliana said...

quite the read, polly. you thought you couldn't write about it, and you did it so well.

Meghan said...
This comment has been removed by the author.
peppers said...

I feel bad that you don't let it out as often as you need to. Remember: it is YOUR blog and you write about what you genuinely want to write about without worrying whether people will like it or not! And besides, I really loved this post and it looks like lots of others did as well. You know what I really hate? Someone who whines about petty "problems." But someone who genuinely lets their feelings out about a legitimate issue they're struggling with? Nah, that's welcome by me. I'll be back. And I hope to see more posts of your true honest feelings, no matter what they are. :)

Seth said...

Tremendous.

Doug said...

This was incredible. Thank you.

Confessions Of My Confusion said...

I'm sorry you have to deal with that sweetheart. I'm sorry it consumes any part of your beautiful spirit.

Your writing with or without full disclosure is alluring, enlightening, and provocative. Your words are powerful and full of meaning. Some see life so much more clearly than others. It may not be the best choice for life. But to see... to relly see... the way you see, that is a blessing too. Just as you have blessed us with sharing your words.

Thank you!

Wynn said...

Wow. This is what makes blogging reach that extra level. I hope you can feel comfortable to tell your stories inspite of them not being funny or portraying some party girl, because we're hear to listen.