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?
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.