i pull hairs from her hairbrush and inspect if they are mine or hers. i stand square in the bathroom mirror pulling my hair back to see her upturned nose, her square jaw, her round forehead, her round blue irises. the veil shifts, i am florescent lit on the rug and standing before her backlit silhouette in the hallway; the first time she looked sick. june comes like shadows on my periphery vision, phantoms of not t/here. i feel my body trying to buttress itself against the onslaught of july. july the fever and her seizures and the waiting room living room of the breathless. july the second year.
after being diagnosed with ptsd in the fall, i thought i would write as a means of processing. in meeting with my therapist and a psychiatric nurse, i stated that i thought writing would help work through trauma, try to remember happy memories of my mother before and within her cancer and her dying, and serve as a cognitive/sensory grounding practice (exercises i am to develop to ground myself in my body/space when my brain feels atmospheric or i have suicidal ideations or night terrors strike or when an anxiety attack tears at my body). my impulse it to tell myself that i’ve failed at this (like so many other goals i set that morph into monstrous beings that remind me of my inabilities/incapabilities and how pathetic i am/have become). but i try to forgive myself the gap between my last blog entry and journal entry at the start of november until now. i try to convince myself (with my composition training) that writing doesn’t equate to words, that i’ve been writing through watercolor painting and making dried herb/flower bundles, that my instagram account is very much a diary and a grounding exercise and a way of re/membering and sensing and working through. but i am prone to violent oscillations and tell myself that this isn’t enough/this is too passive/this won’t help me/this won’t or doesn’t or can’t.
aside from writing, taking a walk is my other grounding exercise (this was much easier to do in the fall when syracuse wasn’t blistery blizzard buried in snow or so grey bleak). aside from collecting moss and flowers and taking photos, a large part of walking was also playing pokemon go. since the game’s release in july, it has become an accompaniment to many of the expeditions/travels of my boyfriend and i, and even the sole impetus to leave the house on some days. while i enjoy walks in and of themselves, discovering new pokemon, getting items and achievements, and earning levels –however silly/trite it may be–is fun. around the same time, we both started habitica, a habit building/productivity app that turns life into a game (it even describes itself as “your life the role playing game”). the app allows you to set lists of: habits, daily tasks, and to-dos. within those, you can adjust the difficulty of the item, the frequency of its occurrence, due dates, and tags. from completing items, you earn gold and silver; health, experience, and mana; equipment and pets; and ultimately levels. alternatively, when you don’t open the app, “check in”, or don’t complete items, there are negative consequences (like losing health). you can also join guilds, groups, and parties with other users. while i haven’t ventured into guilds or groups, i am in a party with my boyfriend, which allows us to complete quests together (another measure of accountability, if i am absent from the app, our quest is effected).
i’m still experimenting with my items, but my daily list includes: home maintenance, communication & correspondence, and stretching & body moving — all things that depression/anxiety disrupt or wipe out all together. my habit list includes: taking care of my work space, working with friends, working outside my apartment, stopping self harm, meditation, arts & crafts, taking medication & vitamins, journaling, reading, writing, weekly date night, as well as a negative/deduction whenever i scratch my arms or legs (a bad habit i do when anxious — awake or asleep). my to-do list varies, but i make a conscious effort to break things down or award myself for small accomplishments.
i know it sounds silly. i know it sounds gimmicky. but i see it (feel it) as self-care. it’s the practice of breaking down things into smaller parts (because i am synonymous with setting unachievable goals for myself). and it’s the practice of feeling accomplished and happy (something i have completely lost touch with) even in the smallest, silliest of units. after a year and a half of essentially shutting down to keep living, the smallest is a critical unit of measurement.
i wasn’t thinking about my play/games as grounding or self-care until i listened to a short audio segment from jane mcgonigal’s “how can video games improve our real lives?” as one of the thousand tabs i had open planning my course on “recreational research” (or research as play) for the semester. she spoke of her long and difficult mental/physical/emotional recovery after a brain injury, which forced her away from her work writing about games and designing games. to get through it, she turned her life into a game that she played with her husband and sister (which became the app superbetter).
i haven’t used superbetter yet, but i downloaded it today with the intention of using it very specifically for my ptsd/anxiety/depression/mourning and maybe my chronic pain/migraines/brain malformation.
there’s more to write about this. not just my use of superbetter, but of gamification as self care, as recovery, as something more than gimmick or bullshit or commodification. as something to connect to threads i leave hanging to keeping pulling on: emotional and experiential games, the borders/bonds between body and technology, body data and representation, affect, inventories.
yesterday i was diagnosed with ptsd. as part of my treatment to work through my trauma and its affects/effects, i will be writing about my experiences. i hope that this will help with my own processing, and perhaps be of some use to others.
yesterday i started a daily medication routine of zoloft and kolonopin (and may be starting prazosin for nightmares/sleep disruption), and will begin exposure therapy, cognitive processing therapy, and desensitization and reprocessing. and i will write through all of it.
[started this on may 27 [the date]] //
a year is unfathomable.
it is no time [void]
it is ghost that [passes] stays without passing [staying]
it is surreality and un-reality and reality i feel like lead in my veins [that collects in head/feet]
it feels [like] nothing at all [i feel [like] nothing at all] but too like breathing in fiberglass or breathing out dirt clods
or like forgetting to breathe until i realize i am cold [my skin cool clay]
it feels the wear of roaming restless incessant and legs listless calcifying [the topography of my toes in bed]
it is uprooted buried emplaced in no place but sowed adrift in fits and fevers fragments of urn and skin cells
and her strands and my certainty grasping sensing
what can be seen but not touched and felt unknowing
instead of making up reasons not to, I created something for an upcoming local gallery exhibit — “The Rest of the World Sleeps”. a sleepwalking twitterbot.
somnambulisms // @nocturn_s
conception: waking writing
// Parasomnias are a category of sleep disorders that involve abnormal movements, behaviors, emotions, perceptions, and dreams that occur while falling asleep, sleeping, between sleep stages, or during arousal from sleep. Most parasomnias are dissociated sleep states which are partial arousals during the transitions between wakefulness and NREM sleep, or wakefulness and REM sleep. //
[cut from Wikipedia entry: parasomnia]
// Sleepwalkers arise from the slow wave sleep stage in a state of low consciousness and perform activities that are usually performed during a state of full consciousness. //
// Although sleepwalking cases generally consist of simple, repeated behaviours, there are occasionally reports of people performing complex behaviours while asleep //
[cut from Wikipedia entry: sleepwalking; emphasis mine]
this bot writes bodied behaviors between waking and sleeping. it runs from a script of words/sensations recorded throughout the day in intervals of waking, resting, withdrawing, immersing — pauses. partial poetics of the un/conscious. the script of this bot isn’t static — it is experiential. as a submission, this bot’s script would be open for contributions to embody the bot and alter the scapes/sensations it experiences. and to follow its sleepwalking/writing.
“tell them momma needs her babies” (text from mom to come home, spring 2015)
mom is home, her center. she connects us through our core, my brother and I metaphysically umbilically tied. he says my stomach heart hurts and I say I can feel it too. but then there are butterflies and waves of water and we feel her home that we carry with us center.
(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?”
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.
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.
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?
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.