Tag Archives: Fibromyalgia

“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.

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Consolation prizes.

My to-do list is a mile long, so obviously I’m updating my blog. In my absence, I’ve been publishing creatively—check out my pieces in r.kv.r.y and DIAGRAM if you haven’t already followed all my buzz about it on Facebook or Twitter—reworking my novel for the final time, and teaching three courses, while attempting to read a book or two for that dissertation proposal I have to write, probably sooner than I’d like to. Besides all that, I’ll break down my life like this: Fuck you, American healthcare system; and fuck you, American system of education that accepts the semi-hazing process of working yourself to the bone to simultaneously finance a higher degree and survive; and fuck you, government standards of disability that indicate that if you are at all functional, you’re not in enough pain to qualify for anything.

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Did you forget? This is the drill that will pierce the heavens

Yes. I did forget. In fact, I may still be in the midst of remembering. And oh yes: I passed with flying colors.

It seemed only right to begin with this clip, as it a) continues the Gurren Lagann theme of my recent quals-related posts, and b) it enfolds triumph into the singular traumatic event in the series, which c) correlates to the trauma of the entire qualifying exam experience and which also  d) happened to be the subject of my first real conference paper, which I presented as an adjunct/independent scholar. That was the conference that solidified my decision to pursue a Ph.D.

Note how I keep searching for patterns, even when they don’t matter to anyone but me. It has been my preferred method of sense-making ever since I started attempting to make sense of my vicarious experience of the Sri Lankan conflict, the problem of accepting that I’ve survived something when that something feels like nothing at all.

There’s a connection to be made here too, but I won’t beat the dead horse.

I realize I’m not alone in feeling like the qualifying exam is a traumatic experience, which simultaneously makes it seem better and worse. That is, I’m glad to be in good company, but if we all know this is how it is then why does it have to be this way? Maybe that’s just my natural inclination to dismantle all of the things, including institutional codes. But it’s something I’ve been wondering about. There’s already an excellent post about the experience of Ph.D. feedback here. All I can do here is do my best to build on it given my own experience.

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The Omega Point.

happyfamily

Left to right: Jaws (young adult), Shogun Star (baby), Fused Tooth (young adult), Big Mouth (young adult)

 

Picture unrelated. But aren’t they precious? They hit their spring/summer growth spurt as I was in the middle of my comps. Nice of them to be my cheerleaders during this rough time.

My oral defense is on Monday, and because I’m terrified of revisiting my comps answers, I’m (productively?) doing nothing and letting my thoughts about each question settle. I’ve got a few irrelevant problems overwhelming my brain, and I thought I could clear my head by thinking through them here, which will hopefully enable me to face my own writing. First, my theoretical positioning; second, the body as a technical assemblage; third, what the hell am I doing with my life.

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Regression is realizing there is no escape.

Last year, a 20-year-old man named Michael Israel committed suicide after battling addiction to painkillers. His father, Senator Tim Kennedy, and Attorney General Eric Schneiderman blamed the system, ultimately proposing a legislative package to “Save the Michaels of the world.” Thus, in an effort to crack down on prescription drug abuse, namely over-prescribing on the part of physicians, New York State enacted the I-STOP (Internet System to Track Over-Prescribing) Act one year ago. It takes effect on August 27th, along with its Prescription Monitoring Program (PMP), which apparently insecurely records, tracks, and transmits patients’ medication histories, dates of attempted and dispensed refills, and so on.

Somehow I missed this memo until yesterday, when I was confronted with the ugly reality that, thanks to I-STOP, I can’t get a refill prescription until after the new system takes effect.

In its overzealous quest to save the Michaels of the world, the State has blatantly chosen to ignore the undue burdens placed on those who medicate responsibly, and with all the hardships it already places on patients and providers, why am I surprised?

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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.

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