Conferencing With/In Pain

Patti Poblete has an awesome how-to conference post that’s practically canonical at this point, and I still refer back to it despite being a seasoned conference-goer at this point. Whatever the guide, though, I usually find myself having to modify it to accommodate chronicity and pain, and since I usually end up telling people in person what my strategies are, why not write it all up in advance this time?

Continue reading

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.

Continue reading

magnetism

Razor Poem

Yesterday I struck my magnet while opening my fridge door and felt it shift like an intruder in my flesh. I’ve only had it for a couple of months, after all. There was no noticeable change in my finger, but my nerves were sounding an alarm so loudly my other arm began sparking too, never mind its dead nerves. It kept me up all night but seems to have resettled, even if it feels a little more magnetically sensitive. I’m not sure I could pick up razor blades before, and paper clips are jumping to my finger across greater distances. All of which has renewed my thinking about the relationships between pain and enhancement/capability. I’m sure it means something that a slight tissue injury on my left arm has reminded the dead tissue in my right arm that it can still speak.

I’ve been playing around with Scrivener, which may be the most beautiful powerhouse of a writing tool I’ve ever come across. Thank you to all the Computers & Writing attendees who recommended it to me! The above image displays some of its organizational functions, along with a poem from the MS I’ve imported into it. Once I get around to Ph.D. work, I imagine it’ll be an incredibly useful tool for writing the proposal and dissertation as well.

In other news, my overly ambitious summer plans include streamlining the MS under submission, drafting my proposal, and teaching two courses, one a hybrid and the other F2F. I’ve also seriously fallen off the self-care boat, as tends to happen when I begin writing creatively, so striking a balance between the two may be a lifelong project starting imminently.

And finally, Computers & Writing, as always, was a fantastic conference. I always attend and present expecting to leave revitalized, and this year my faith was rewarded tenfold. More thoughts about the conference forthcoming, once I’ve digested the experience enough. In the meantime, if you’re curious, you can read all about it via the hashtag #cwcon.

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

“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 syndrome (FMS), 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 1.0 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