Tag Archives: Health Care

Consider this a warning.

I want you to know you’re killing me.

You always were. It isn’t news. But assume your postures of defense if you think I’m wrong. Tell me you’re protecting the economically disadvantaged in dire straits, stripped of health care because they can’t afford it, and what could I possibly know about that; and I promise, I promise, I won’t tell you in return how I teach a 4:4 load, tutor four hours a week, do freelance editing, and still have to ration out my doctor visits with a careful hand and weigh the costs of medication against the costs of my next meal. I won’t tell you how before ACA I had to ration physical therapy visits because of lifetime caps per body part and condition, or that I suffered pain like slow implosion for years before accepting a prescription that made life livable, because I couldn’t afford it. I won’t breathe a word about how all the proposed cuts, if I choose to live with them, will leave me with the kind of debt you can’t breathe through, like what ought to take your breath away, but won’t, the knowledge that millions like me or worse are imperiled by you.

Today you’re everywhere with your circle-jerk applause and sound-bite rhetoric you can easily repeat. Some kind of Yes, calm down, you’ll be fine, there are protections in place you know but really, you should know better, you should have taken better care of yourselves, eaten better, exercised more, stayed away from treatments your insurance wouldn’t cover, stopped getting sick, stopped aging, stopped having babies, having sex, moving, breathing, stopped your beating heart, if you knew you couldn’t pay the price.

What’s left that we can afford, but suicide, or murder.

You make it our civic duty to go off our meds and buy guns we’ll gleefully wave at anyone who is or isn’t there. Drown our unwanted in the bathtub like feral kittens. Put our dependents on the streets when they become too expensive. Die at our desks of chronic illness, cancer, heart disease, dementia, stroke, pneumonia, the flu. Decay into our landscapes. Hang ourselves high, where the warlord can see us and count us part of his triumph.

This is what we’re calling the new normal, or at last, a victory. That death is less ruinous than what you propose.

You know who you are. You are the ones who will denounce the above with apoplectic rage, but just tell me how it’s anything else. You know. You aren’t stupid. You exist to be unaccountable. You are the waterproof bandages with which we seal our outcry. You fashion greasy casual nooses and jeer as we walk by, all righteous fury because the world isn’t deepening the divisions you need. White/black. Able/disabled. Rich/poor. Living/not worth keeping alive.

You like it this way.

But we aren’t stupid, either, and we are not resigned. You’ve always been here, knives out and aimed at our guts, but it’s not for nothing that we’ve survived this long. We have learned how to outlast, with all our wits about us, we know that the kingdom you are building to map the heavens is habitable by monsters alone, that the closer you come to this 1:1 reflection the more you reveal that the gods as you spell them are ugly and false. Try to stamp us like cockroaches to primordial ooze, but we’ve always been oarfish, swimming vertically and forever, the messenger you are always killing before we expel even a breath to recount the error of your ways.

There is no heroism in murder.

Wield your signing pen against us like the Reign of Terror’s guillotine, and I promise, I promise, you will breed a nation of dissidents, a pantheon of deities rising from below, where we hail from in all our diversity, too far down the ladder for you to ever grasp.

Tagged , , , , , , , , , , , ,

Anamnesis with 15 Cites.

How to work when the pain is so great it slows even time? Indefatigable voice curling around and in on itself in the gut/womb space where I’ve put it down, you rise when and where I deny my body most: in the clinical waiting room; at the doors of the academy. [1] You are more familiar than I can say of my own touch on my own skin, as unpredictable a receptive surface as it is. A long time ago I knew that the point of my elbow will nervously caress the back of my throat, my right leg laid horizontal is a spire of tattoo ink run into my big toe.
The institution would have me call it “burning,” “aching,” “swelling,” “throbbing.” The same staple words of bad erotica, turned sterile to suit the bodiless worlds of hospital and university. [2] A carefully crafted, scientistic semantic field that wrongs patients, experts, scholars alike.
Really the institution would say I must be confused, because pain doesn’t typically refer like that.

Continue reading

Tagged , , , , , , , , , , ,

I don’t yet have the tools to make you understand how normal this moment really is.

I’ve wanted to say for weeks now that there was a day, while teaching, that I lost my legs, and I completed my seminar with the podium in a death grip to spare myself the added pain, and shame, of falling. That day, I wanted to write that I shuffled like an infant or a drunk down and up subway stairs, because cabs are a luxury reserved for real emergencies and I already felt guilty for even wanting to use it. That day, I was in too much pain to write, but as I stumbled towards my apartment, pausing to rest on strangers’ stoops, a man stepped in my face and tried to take my elbow, saying, “Hey, baby, you look like you need help, let me walk you home.” I said no. He followed me for 4 blocks, insisting, laughing, “Let a real man take you home.” I’m sure he thought I was drunk. Uninhibited. Easy pickings. When the truth is, I couldn’t run. It’s the recurring nightmare I have, playing out in real time, that when they come for me I will have nothing left, not energy, not physical ability, to protect myself, not from street abduction, home invasion, assault, robbery, rape.

To think this is called running out of spoons.

The flare-up, like all flare-ups, is gone now. I haven’t bothered to say anything to a doctor because experience has taught me how they’ll read it as acute pain, an isolated episode, because I’m all better now, I’m not army crawling through my apartment, and my body is already forgetting it the way we shed winter’s mortal cold when faced with summer sun (Morris, 1998). In the cold and bright rooms of the hospital wards they tell me the story of my pain in quantified measure, evacuating it of meaning (Morris, 1991). So there I linger, at 145th Street, at Deleuze’s convergence of critical and clinical as an opportunity for mutual learning, at a free clinic where I stand out as too rich and not sick enough, alienated from everything and myself (Malabou, 2012), waiting for the threat to pass, waiting to be thrown out on my ass to face it, because only the thin line where earth meets sky is where the wastebasket diagnoses, like me, belong (Bowker & Star, 1999).

Tagged , , ,

This is being(-in) a horizonless world.

For a half-hour, my left hand becomes the hand that commands the heavens. Close it, fiercely, against my thigh and my whole body is distilled to this one point, a fist bristling with energy, five invisible skins thick, resonating with the air. Open it, and forces flow in all directions, the visible skin of my left ring finger visibly roiling under the pressure of sudden, unasked-for godhood.

Continue reading

Tagged , , , ,

#Biohacking Part I: Thoughts on Dietary Practice

When I find myself drowning my instinct is not to surface, but to swim deeper. I tend to operate at full capacity: three different undergraduate courses in two different states; drop-in tutoring on what would have been my off day; that god-forsaken memoir that accuses me every day of having given up what makes me truly happy. In theory, my dissertation proposal. In practice, an aggressive self-care regimen that, over a month in, appears to be working, and has gotten me thinking quite a bit about biohacking.

Continue reading

Tagged , , , ,

We are always asking the world if we do in fact exist.

A while back a friend of mine proposed the following theory: I’m actually a Saiyan, but because my body isn’t taking enough damage in battle to level up as it ordinarily would, it has to take the initiative to fight itself so I can achieve my next power level. I wouldn’t say I’m over 9000 by any stretch of the imagination, but.

But like always I’m using humor to minimize how far this situation spiraled out of control.

One month and one emergency surgery later, I’m healing well and readjusting to basic movement and day-to-day living, and my mood is so improved that I can only think my exacerbated depression lasted so long not because of Lyrica withdrawal, but because for three weeks my body was struggling to inform me that it was dying.

To summarize:

Continue reading

Tagged , , ,

“Depression drives me to gaze into abysses.”

I’m quoting Jake Jackson, from this article at phdisabled, which I skimmed when it was published but read more closely yesterday, on the subway, legless and crawling before the realities of health care. Again it brought me to the edge of tears, as words do when they tell my experiences back to me in a form I was previously unable to grasp.

This is my current abyss.

Continue reading

Tagged , , , , , ,

I’ve sewn you up, I’ve set your bones, but I won’t bury you.

Within hours of receiving the breaking news alert that Robin Williams had committed suicide, I commented to my sister that I wasn’t surprised, that I had sensed before I explicitly knew that he was depressed. I was at a loss to explain myself when she asked me why. A day later I spoke with a friend who has bipolar disorder and she immediately grasped where I was going with this. For her, the signal was that manic energy. For me, it was the freely associative quality of his genius. For both of us, these signals were intensely personal, because they were personal to us. It made terrifyingly perfect sense to simultaneously wish he hadn’t done it and forgive the impulse. I say “impulse” but the language is wrong; suicidal ideation, like depression, isn’t a fleeting sadness but a chronic, gnawing desire, a void in the gut that whispers and speaks by turns. The verbiage should be less about “battle” than Sisyphean endurance in the face of being slowly hollowed out. As others have stated, depression is the absence of feeling, the beast on your back sapping the meaning from everything, visible only to those who are similarly weighed down.

I’ve been mourning Robin Williams along with the rest of the world. I don’t want to rehash any of the pieces I’ve read, which alternately touch on suicide contagion; the Academy’s problematic tweet; the romantic notion of Pagliacci; the comforting narrative of depression (along with terminal illness) as something that can be “fought” or “battled”; the slow emptying-out of the word “depressed” itself, which is used interchangeably and wrongly with being sad. Instead, I’d like to address something I haven’t seen yet, which is the other comforting narrative that (re)productivity and accomplishment are enough to “defeat” depression, the implication being that if a (re)productive, accomplished individual is unable to pull themselves up from the dark place, they were too fragile for this world anyway, or else they were afflicted with some other disorder preventing them from recognizing that the answer to “What’s the point?” lay in their spouses, offspring, curriculum vitae. It’s a false narrative, linked to capitalism or social control or the biopolitical regulation of bodies, but ultimately it’s meaningless to the ones at which it’s aimed.

Continue reading

Tagged , , ,

What you think of pain is a shadow. Pain has a face. Allow me to show it to you.

In my life as it was prior to my diagnosis, in the course of my usual exploration of the Internet, I came across the Schmidt Sting Pain Index.  It is an imprecise but admirable attempt to catalogue and describe the pain caused by Hymenopteran stings.  I possess an amateur fascination with entomology and herpetology and with Schmidt’s original paper, which assigned a perhaps inexact number to each sting but accompanied each with a refreshingly creative description of the pain.  An entomologist, Jason O. Schmidt was inadvertently stung by several members of Hymenoptera in the course of his research and realized the the potential uses of quantifying pain.  Though it wasn’t his primary research, he didn’t waste the data; instead, he created a five-point scale from 0-4 to classify the kinds of pain one receives from being stung (The Straight Dope).  Archetypal representatives are listed below:

0: Imperceptible.  The stinger doesn’t penetrate the skin.
1-range: Sweat bees (light, ephemeral, almost fruity); fire ants (sharp, sudden, mildly alarming); or the bullhorn acacia ant (someone has fired a staple into your cheek).
2-range: The bald-faced hornet (mashing your hand in a revolving door); or the yellow-jacket (hot and smoky, like W.C. Fields extinguishing a cigar on your tongue).
3-range: The red harvester ant (bold and unrelenting, like someone is drilling your ingrown toenail); or the paper wasp (caustic and burning, with a distinctly bitter aftertaste: like spilling a beaker of hydrochloric acid on a papercut).
4-range and higher: the tarantula hawk (blinding, fierce, shockingly electric, like a running hair dryer dropped in your bubble bath); or the bullet ant (pure, intense, brilliant pain, like fire-walking over flaming charcoal with a 3-inch rusty nail grinding in your heel).

In my life post-diagnosis, this scale has taken on new meaning.

Fibromyalgia (FM), a chronic systemic pain condition that is especially heightened by pressure, can range from a 1 to a 4+ on Schmidt’s scale but rarely, if ever, is it a 0.  The symptoms are unique to each sufferer, but in my experience the pain has ranged from acute and persistent, like clasping a lit electric bulb between your bare hands, like blades sunk deep in a flexing muscle, like pricking, itching needles, noisy on the skin, like a sweaty fist working your heart, like vivisection, no sleep agent, no anesthesia.

This piece is for those medical professionals who wrote me off as healthy because I was professionally dressed, “I looked too good to be unwell,” or who asked me, point-blank, “And you’re sure it’s not all in your head?”  It is for the people who tell me, with a tired, tolerant patience they don’t deserve to have, that “pain is largely psychosomatic, you know?  Just stop thinking about it and it’ll go away.”  It is for the countless, awkward Schmidt 4.0+ days I’ve had to dodge a well-meant hug, or flinched at a touch I couldn’t avoid.  It is for Empire Blue Cross Blue Shield, which has conferred upon itself the godlike ability to decide whose pain is deserving of extended outpatient treatment.  (Hint: mine no longer is.)  It is for the people who sympathize but do not or cannot understand because I appear more or less functional.  It is for the Schmidt 0.0 days, when I lull you into thinking I’m “better,” or the predominant and tolerable 2.0-3.0 days, when controlling my outward response can be performed through sheer will.

Mostly, though, it is for all the times you have not seen me break down and cry, on the subway, in line for a bus, on the NJ Transit stairs, on the walk from the train station to campus or from one classroom to another or in the bathroom during class breaks.  It is for all the times I couldn’t take it, and you never knew.

Continue reading

Tagged , , , , , , ,