quantifying the experiential: (un)known

(then. and again. until the end.)

the nurse enters my mother’s room, scans her ID bracelet, and from the computer station asks, “what are you at, christine?”

(then after)

i’m at my gynecologist to set up genetic testing after learning how pronounced the seeds of female cancers are in my family. i complain of pain in what i would describe as my ovaries but can’t describe it. i’ve had/have it for months. the doctor knows my mother just died of ovarian cancer and tells me that it must be hard to be grieving my mother, but i don’t have ovarian cancer too. she pats me on the leg and leaves the room.

(then before then)

i’m 17. i have the recent knowledge that i have what is called a chiari type II brain malformation. the neurologist performs motor reflex tests and asks me what my headaches feel like–how would i quantify the pain?

(then and when then began)

like my dad pushed me to keep then, he records all my mom’s symptoms, pain levels, ac/counts of body, intake and output in a notebook. he looks for patterns. i ask my mom how she feels and she says crummy or sick or that my dad would know better. for the better part of a year before she was admitted to the emergency room in excruciating pain (a 10? hurts worst?) and a stomach distended nearly double, she complained of pain to her doctor who prescribed her antacid.

(the experiential)

there is much of our body that can be quantified in volumes, counts, formations, but for that which has no externalizing effects/symptoms–or worse, effects that are general and dismissible–the data is experiential. how can the experiential (the embodied) be universal?

as i write this post i have a headache. what does it feel like? my neck and spine feel stiff. all my back muscles carry a heavy ache, low but to the core. it feels like liquid ice/cold flows down from the top of my head. the nape of my neck/the bottom of my skull and my mid spine feel like ice. my arms and legs are mostly numb. there’s a faint hissing in my ears that feels like i can focus on the movement of my ear’s stereocilia: like i can feel what i hear. light makes me want to close my eyes. when i look at something that should be still, it looks like it oscillates side to side very quickly into something like static. my head feels like it’s being crushed at its sides. i can feel the blood flow through my brain like static. my body is white noise; i would rate this pain a 7. but i couldn’t tell you why outside of my own experiences with headaches the last thirteen years. it hurts, but i’m able to write. i couldn’t go socialize or exercise, but i can sit up. i have had lesser headaches and more severe ones that leave me unable to get out of bed. then i second guess my 7, many of my headaches feel like this, which makes me wonder if the number should be lower. or if my headaches are mostly 7s, perhaps i should stop putting off finding a neurologist near syracuse. and a 7 isn’t a set experience of pain; there are different bodily sensations or manifestations of it.

(the universal)

pain scale.png

numeric rating scale

0 | no pain

1-3 | mild pain [nagging, annoying; interferes little with activities of daily living]

4-6 | moderate pain [interferes significantly with activities of daily living]

7-10 | severe pain [disabling; unable to perform activities of daily living]

“A pain scale measures a patient’s pain intensity or other features. Pain scales are based on self-report, observational (behavioral), or physiological data. Self-report is considered primary and should be obtained if possible.” [from wikipedia] [bolded from me]

trying to classify pain makes sense (and also makes sense). trying to quantify pain may help qualify/give quality to symptoms that can help diagnose and treat. but what is the worst pain? what is the worst pain you can imagine? the pain scale is admittedly experiential, but it is relied on to re/act. how can the experiential be given language–and moreover, given language that classifies?

my mom spent so much of her last year in the hospital. the number of times nurses came in and out of the room each day is easily lost count of. i wasn’t there for much of that time, so i don’t know what language of the experiential was established with my mom. the majority of the time when asked what she felt (and a number was what was expected), there often wasn’t any description or qualifying information that came with it. there were times she was talked down a number or two by the nurse reminding her of a prior use/association of that number (as if a body is a constant), times when she cried and could only breathe out 10, and times still when her pain was high but she wanted so desperately to go home that she gave a lesser number.

dull, electric, radiating, sharp, burning, throbbing, acute: what do these words help make understandable? what about the use of metaphor–feels like…? what can be done with ambiguous data? with description as ascription?

what might a historical pain scale make accountable? an anthropological or cultural pain scale with set understandings/assumptions/norms accounted for? what would a pain scale look/sound/feel like that was defined/classified by the patient/body it measured?

(the un/known)

i took a classification course in library sciences my first spring at syracuse that focused on understanding and conceptualizing organizational schemas. my final project in the course was on the complexity of classifying smell or the perception of odor–perception being important, as smell is sensed and interpreted in the brain. smell is interpreted in relation to past experiences and in relation to the substances being emitted as smell. further, smell is interpreted as a whole odors mix–there is no differentiation in intensity, concentration, or the constituents of odors. smell is interpreted in the brain with memory and emotion (the olfactory nerves are located near the amygdala and hippocampus).

smell uses an intermediary language of description because it is so subjectively experienced. linguistic studies are conducted in different cultures to explore the terms used to describe odor to try to get at their typicality. but there is no universal classification of smell because classifying phenomena outside of language–emotions, memory, experience, cultural understandings–can’t quite get at the experiential.

(classification is futile/fertile)

this might seem easily dismissible because these numbers, these categories, these sensations aren’t seen as data–except that they are. though not easily quantified or categorized, this language of the body–the description of the experiential–is telling. i’m interested in continuing to trouble/unravel/make a mess of how sensation is sensed and made sensible/sensable.

the next exploration will work from isabelle bazanger’s “pain physicians: all alike, all different” from differences in medicine: unraveling practices, techniques, and bodies.

IMG_6428

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