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.
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.
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.