While sitting in my doctor’s waiting room this morning, I began working my way through Margaret Price’s “The Bodymind Problem and the Possibilities of Pain.”
I’ve been trying to come up with a metaphor for my experience of reading this article without success – is it more like walking through a museum, with large pauses for pondering particular points? Or is it more like eating a really good meal, one I’m going to keep comparing all my other meals to for several weeks, probably resulting in several courses of blog posts? (And are the blog posts not unlike a bird regurgitating food for its young, with all the gustatory charm, relative to the original, that that entails?)
I have no idea. But in hindsight, I can’t help but draw the connection between my reading and the comment I ended up making to my nurse practitioner, half an hour later:
“It’s all right if I always have migraines. I find them useful. But I’d like to do something about the pain.”
In the context of what we “know” about migraines, medically and colloquially, my comment is counterintuitive in the extreme. It borders on madness.* Migraines are pain, according to the popular literature and even to some doctors, who “read” the rest of a migraine’s symptoms – nausea, mental fog, sensitivity to light, etc. – as resulting from extreme pain rather than sharing an underlying common source with the pain. More to the point, who – and anyone who has ever had a migraine, even once, would ask this – who would ever want extreme pain?
I don’t. To paraphrase Alison Kafer, I have no interest in being in more pain than I currently am. In fact, I have a great deal of interest in being in less pain, as I noted to the NP.
Price doesn’t insist that pain is universally “bad,” but she does point out that if we are going to accept disability and impairment, to celebrate them, to center them, to desire them, we must make room for the complicating fact that many people do experience their pain as bad and want it to stop. I feel this.
When I was first introduced to the social model of disability, my migraines meant I wanted to throw it across a room. How on earth was I supposed to accept, much less desire, my migraine states? I’d had a minimum of three migraine days a month, every month, since I was twelve years old. From January 2006 to December 2007 I had a migraine every single day of my life – one two-year-long haze of nausea, head pain, and sunglasses. It lifted just in time for me to graduate from law school. (To this day I’m still not entirely certain how I did it.)
When I met the social model in 2010, I was having the ten or more days of migraines a month that qualified me for Botox treatments. I was also bedridden and supporting myself entirely from a laptop in my dimly-lit bedroom. There were no societal changes left to make: I had total control over my work environment, and my parents were handling most of my ADLs for me. Yet I was still miserable, still impaired, still disabled.
Yet here I am, five years later, telling my doctors that I would actually rather keep the migraines, especially if we can continue to dial down the pain. What gives?
It is a truth universally acknowledged by migraine patients that migraines screw with one’s ability to think. During my own migraines, doors to certain areas of my brain, like the one that multitracks sensory input, the one that does logic, or the one that holds all my non-migraine-related memories, slam closed. But doors to other areas of my brain, like the one that does poetics and plot, the one that contains my hypergraphia, or the one that holds all my migraine-related memories, open. And those doors are only open during migraines.
Put another way: my migraine pain is impairing. It’s bad. I would like it to stop. My migraine changes in mental state, however, are occasionally disabling (try driving a car when you can’t multitrack sensory input!), but they are not impairing. In fact, they’re the only time of the month I get any creative writing or poetics done at all – and, thanks to the hypergraphia, I get an extraordinary amount of creative writing and poetics done in those four days a month.
My NP deserves thanks, incidentally, for taking this comment entirely in stride. Partly, she understands that there is more to the migraine state than “just” pain. Mostly, she’s deeply committed to practicing exactly the sort of “care” Price explores in her article: the kind that affirms another’s pain and seeks to help end it, when desired, without categorically rejecting the impairment or disability – or the categories of identity – that seem attached to it. My NP and I have both accepted the idea that I may always live with migraines, which means we can share the goal of helping me to live well with migraines – which, for me right now, means minimizing the pain.
*by which I mean the colloquial response is likely to be “are you crazy?”, or that I might be seen by some medical professionals to have only a tenuous grip on reality for having said it – such is the dominant aversion to desiring disability.