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.