now you see me...

So, I've been wearing a neck brace lately to help with the pain.  It is actually pretty amazing how much the thing helps-- makes me wonder why I had to hear about this method from a friend versus one of the 85,000 health care professionals I've had to deal with over the past four years.

I've been trying to cover up the brace-- the soft collar, I mean-- with scarves, but I think I need to be more diligent adjusting it.  People have been asking, and I feel very silly explaining that the car accident was four+ years ago.

Anyway, my disability suddenly feels very public- visible.  I'm not sure how I feel about it-- I know sometimes I've felt like people don't believe me because I have nothing to show for my pain.  But is a brace really a concrete display of pain?  I've taken more Vicodin than usual lately, and I wonder if the resulting slur of voice is more obvious.

Part of me has always wanted the pain to be more like blood oozing from my ears-- an obvious indicator of pain.  Those that are more attuned to the disability cultures seem to notice when I hunch over and rub my neck periodically, but I definitely feel panicked that everyone else thinks I'm faking for pity. 

But also, sometimes I want to just be "normal" like every other able-bodied student.  Not that I'm the only one.  And that is definitely a helpful factor.

This sense of confliction has appeared a lot recently- but I will try to write about it more clearly when I'm less pain-distracted.

Capstone- Introduction and Rationale

These headaches leave one like sand which a wave has uncovered - I believe they have a mystic purpose. Indeed, I'm not sure that there isn't some religious cause at the back of them - I see my own worthlessness and failure so clearly; and lie gazing into the depths of the misery of human life; and then one gets up and everything begins again and is all covered up (78).

The above quote is abstracted from the letters of Virginia Woolf, a woman who suffered from terrible headaches for nearly the entirety of her life (Coates 242, Ingram). In this quotation, Woolf considers her experience of pain in relation to spirituality and philosophy, and her sorrow and lost sense of self-value demonstrate a degree of connectivity between so-called “physical” pain and “psychological” pain. Esteemed neuroscientist Patrick Wall explores the roots of this physical- mental distinction in his final book, Pain: The Science of Suffering. In his chapter on the “philosophy of pain” (17), Wall focuses on how Western philosophy primarily developed far before modern scientific developments in the understanding of pain remain the basis of cultural attitudes toward pain in the Global North. Descartes essay "L’Homme" is mentioned in this and other texts (Hains, Hardcastle, Grahek) as one of the founding text for the theory of dualism, that concept which conceives of the the mechanical, animalistic, and rude body as “fundamentally distinct from and subordinated to the privileged term in the dichotomy” (Cherniavsky 26), espirit, meaning mind, soul, or spirit (Wall 18). Descartes develops the idea of “animal spirits” (Hardscastle 3), tubes within the body through which that which would cause pain is pulled from the bodily origin of pain to the brain, which then allows the pain to become a pure experience. For Descartes, it is the mental function of humankind, which not only makes us human but allows us to exist, epitomized in his famous cogito ergo sum and expanded in his Discourse on the Method:

From this I knew that I was a substance the whole essence or nature of which is simply to think, and which, in order to exist, has no need of any place nor depends on any material thing. Thus this “I,” that is to say, the soul through which I am what I am, is entirely distinct from the body and is even easier to know than the body, and even if there were no body at all, it would not cease to be what it is (19).

Yet in his Pain, Wall argues against the separation of mind and body, sensation and perception, and furthermore, the utter disregard and general lack of respect for body processes. Wall explains that even those events considered the most physical, such as a professional athlete running a marathon and entering “the zone” require a great deal of mental exertion as well (25). Cherniavsky furthermore emphasizes the importance of Marxism as one of the few “major intellectual tradition[s] before the twentieth century to understanding human creativity and the production of value as fully bound up in the materiality of embodied life” (27).

Wall wrote Pain while going through some of the most painful final stages of terminal prostate cancer, and explains that his composition of this book is “to give the readers the power of understanding processes in their own body” (viii). It is important to note that Wall’s use of the word “body” generally includes the mind and any spirit as part of its definition.

Wall approaches pain from a predominantly if not completely Western philosophical and Globally Northern scientific perspective, which he acknowledges later in the book (67). Yet many of his theories and even examples utilized agree with the philosophies of the Kyoto School of Zen Buddhism.

While Zen Buddhism has numerous names in various language (Chán in Chinese, Seon in Korean, Thien in Vietnamese, etc.), I will be referring to this school of Buddhism by the Japanese term Zen simply because the Buddhist scholars with whom I intend to dialogue are from Japan and write predominantly in Japanese. Furthermore, the justification for relying solely on Japanese Zen scholars from the Kyoto school simply resides in the fact that I myself read Japanese and am thus able to consider these works in their original language. All Buddhist terms that do not belong explicitly to Zen Buddhism will be listed in Sanskrit, because these terms are more accessible to an English speaking audience that, for example, uses the term nirvana (Sanskrit) versus nibbana (Pali). Furthermore, many of the modern Kyoto school, and pre-Kyoto school, translators prefer Sanskrit to Pali terms in practice (Enlightenment Unfolds, Nishitani, Last Writings). Non-English words will additionally be printed without italics, as a political statement. “The combination of the foreign term, marked by its italicization, and the explanation . . . read as an exoticization of a culture different from the one the implied reader is assumed to be part of” (Nodelman and Reimer 176). Additionally, partially in tribute to Wall and because such distinctions are not made in the Kyoto school’s philosophy (An Inquiry into the Good 49), I will not distinguish between physical, emotional, and mental pain in the remainder of this essay.

In January 2006, I was in a car accident, which has left me in constant pain ever since. This pain, which is an effect of the muscles contracting in preparation for the collision, resides primarily in my upper back, neck, and shoulders, and is likely “incurable.” Throughout the years, I have depended almost solely on mental health professionals and medical doctors to “cure” the pain through such practices and medications as acupuncture, physical therapy, physical training, narcotics, Qigong, massage, herbs and teas, anti-depressants, and Tai Chi (Untitled 3). Yet, what are the implications of “curing” pain in light of a philosophical model in which dukkha (suffering) is a reality of life, as well as a path to bodhi (Enlightenment)?

In 2009, I wrote an essay that sought to answer this question, in which I found, and argued, that “the [pain sufferer] can utilize his pain and realize it as potentially becoming or already existing as one of the eighty-four thousand dharma doors to enlightenment” (1). While the nature of the paper makes it impossible to accurately summarize without losing the overall scheme of the argument, I will highlight one key point, which is the numerous instances, noted in Buddhist philosophy, when monks subjected to extreme physical suffering experience the realization of enlightenment, including the monk Linji following the punishment of sixty blows from a senior dharma brother (Enlightenment Unfolds 132).

In this study, I will consider a number of questions with regard to pain on a both deeply subjective and transnationally significant level. For example, in consideration of the three primary United Nations documents pertinent to universal human rights, to what extent are so-called “bodily” rights addressed? As explained by Cherniavsky in her brief essay on “Body”: “to self oneself bodily is tantamount to selling oneself, to an erasure of personhood that paradoxically, would suspect the seller’s ability to enter into such a contract in the first place” (27). In order to be considered as warranting these human rights, a human body is required, yet the espirit is not, whatever its context; despite Western philosophy’s fascination with rationality, a number of U.N. charters, including the Declaration on the Rights of Mentally Retarded Persons, and the Declaration on the Rights of the Child explicitly states that “the child, by reason of his physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth.”

As a cultural studies scholar, I plan to consider the “historical contexts of the culture agenda” (Johnson et al. 14) with regard to the privileging of certain pain philosophies and responses to pain in U.S. Society, particularly within the current private insurance-driven healthcare system. For example, one issue with which I am keenly invested is the refusal of certain insurance companies to finance “less traditional” pain response methods, particularly those which do not seek to “cure” pain or “cure” depression associated with pain, but, rather, seek to help one come to terms with pain and/or further one’s understanding of the experiences of pain. Why will my insurance allow me to attend counseling sessions, purchase Vicodin, and attend physical therapy, but refuse payment for Qigong, meditation, or spiritual healing?

Some of the lingering questions and themes to which I plan to speak in this project include:

1. In what ways do U.S. healthcare policy and current cultural philosophies empower the dualist perspective on pain? For example, why is it assumed that I shall seek an MD for an illness, a mental health specialist for depression, and a religious/spiritual leader for spiritual despair (or philosophers for raison d’étre questions)? Furthermore, what philosophies have been elevated and which diminished in this distinction (i.e. Descartes versus Marx)?

2. How does the elevation and privileging of mind/soul over body in the aforementioned dualist theory extend to the privileging of people of certain occupations and/or non-normative physicalities? To what extent can the cultural preference for mental over physical account for the differentiation and privilege of “white collar” versus “blue collar” workers and the disempowerment of both “mentally” and “physically” disabled persons? What are and have been the implications of this philosophy on the treatments of animals?

3. Pain is generally understood as an undesired state of being. The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage” (qtd. Jackson 3). Yet, there are those who purposefully seek out pain, particularly as relates to sexual gratification. Most of the pain philosophers whose works I have encountered thus far have avoided the ideas of masochism or included extremely brief and slightly predominantly passages on the subject; Wall refers to a “quasi-legal underground sadomasochistic subculture” (14). Furthermore, athletes are often told “no pain, no gain,” and this concept of pain as a sign of achievement or means to something great can also be seen in the birthing process. To what degree can pain be understood as a not wholly unpleasant or sometimes pleasant experience?

4. The dangers of a pain-free existence are additionally well documented (Wall 49-52, Life Without Pain, Bar-On et al, Hu, et al.). To what extent is pain beneficial, even beyond medical explanations?

5. Chronic pain is generally defined as physical pain lasting for at least three to six months since its onset (Wall 117, Jackson 3, Cochran, Jr. 10, Phillips 11). As one who has experienced this chronic pain for over four years and identified as a chronic pain sufferer, I must ask myself whether or not I truly want the pain to be cured. While I certainly wish for a lesser degree of pain, the idea of living an existence pained only to the extent of a “normal” human suggests that part of my identity may be lost. In terms of the particular vocabulary surrounding chronic pain (“having chronic pain,” “my pain”), can we say that sufferers possess their pain and take ownership of it, such that they may wish not for complete alleviation, but only partial relief?

6. Elaine Scarry’s The Body in Pain: The Making and Unmaking of the World begins with a chapter entitled “The Structure of Torture: The Conversion of Real Pain into the Fiction of Power” (27). What are the implications of long-term physical pain when considered given the current political debates surrounding the use of torture in the so-called “war on terror”? In particular, how do Scarry’s theories surrounding torture as a two-part process including “a primary physical act, the infliction of pain, and a primary verbal act, the interrogation” (28), relate to negative emotions associated with pained existences and religious escapism as an accepted means of healing?

7. Because chronic pain manifests nearly always in the manner of an invisible disability, how do the additional factors of dismissal by medical professionals and lack of empathy or understanding from others affect the person in chronic pain? Furthermore, to what extent can this dismissal prompt the chronic pain sufferer to hide his or her pain, as suggested in Andrew Levy’s migraine diary A Brain Wider than the Sky, “I obsessed on the importance of making this headache in private; on making it as invisible as I could to other people” (77)?

As a means of exploring these and other questions, I will not only continue and review my web log (blog) on personal experiences with pain, but will additionally engage in conversation with many of the pain theorists, philosophers, diarists, doctors, etc. regarding their opinions and supposed facts regarding realities of pain. Additionally, I will actively work with a minimum of five other people experiencing chronic pain to further discuss themes addressed in this text-based research, my own opinions, and how their experiences with pain differ from my own. The point of these conversations are not to be ethnographic in nature, but rather to avoid beyond lost in Pain as a theory and/or focus too entirely on my own pain. Wall warns against both of these points in his Pain: The Science of Suffering, highlighting how his own theories regarding pain were reassessed when he became a chronic pain sufferer (vii-viii).

Ten ten ten

Ugh, of course, of COURSE a pain crisis would hit right before the end of the quarter.  Having to "suck it up" is just exhausting.  I need to read a book on poetry as method, get three papers written, grade mid-terms and weekly assignments, finish my research proposal, and explode.  Literally.  I think I will explode.

Anyway, since I will be studying chronic pain for my capstone project, I'm going to post my capstone proposal here once it's finished.  I'm thinking a poetry/mixed writing method book autoethnographic but also sharing the voice with collaborators. 

Need to get my IRB together too.  Ugh.

On the plus side, two weeks to go.  Just need to hold on for two more weeks! 

Acupuncturist... number two!

I think I'm going to try going again.  I found another acupuncturist in the area-- I'll see if she takes my insurance.  Anyway, let's hope I just have a body type that was hard for the other lady to work with.

I need to be hopeful-- the pain has been terrible lately! 

To bed to bed...

Fancy Supplements

Got some fancy supplement things (my mom got them from the gal who does her hair who used to be my sister's boss- ha- confusing)  that are supposed to help people who have trouble losing weight when they have pain.  Three in the AM, three other pills in the PM (two bottles).  The real question though: what were those ladies doing talking about my weight?

Anyway, we'll see how it goes.  Worried that they might secretly be full of fibrous things that make you secretly bulimic.  Probably should get the name to post here too....

Watched a documentary called Life Without Pain about three young ladies (4, 7, and 10) with congenital insensitivity to pain.  I think I need to watch this film every time I feel bad for having pain all the time-- it would be so much worse to have none at all.  They all chewed up their gums when they started teething- pictures of babies with blood down their fronts.  One gal lost an eye because she didn't know not to touch it. 

I'll post more on this condition as I learn more.  I know that it is rare and very dangerous. 

<3

dr

I should go see him.  Maybe get some new medication, a new prescription for another therapy.  Ask to see if I might get a disabled parking permit. [Was told how bad driving is for the environment, encouraged to take the bus.  How did the bus get associated with pain as well?  The bumps.  The sitting.  Jolting pain to make my hands numb and everything else hurt]  The trouble is, what if we're out of options?

He mentioned that we were mostly out of options.

I don't want surgery.  That is our last hope.  I don't want it.  It sounds so much worse.

And the having to explain the pain, have him touch various parts of my body, "Does it hurt here?"  "How much on a scale of one to ten?"  Bend me in different directions, trying to find the hurt.  But it seems like it's everywhere now.  Got into my blood.

How to explain that I need to cancel something important so I can lie in bed and cry all day and have a private catharsis?  Exorcise the bad feelings, "Pin it to a flower, put it out the window, and let it fly away."  Heard that today- getting rid of the bad feelings/ bad sentiment toward others.

I'm hunched over with pain lately.  I think a cane might help, but then I would lose my invisibility.  These are things I could talk to a doctor about.  But I feel like I need to opt out of the medical model.  I feel it has failed me.

Tai Chi and Qigong made it better for a few hours.  Not long enough.  I should start practicing at home.  Anyway, sleep.  I should try to sleep.  Find my Vicodin and slip away.  Stop watching House.

Good night.

sounds that ache

that nails across the chalkboard, dragging meanly sound
knife catches the plate and screams sound
breaks trying hard as they can but not making it sound
that sound, kind of
only it just hits the ears that way
you know?
but really
it's Debussy's Syrinx
recorded by James Galway
someone big like that
and the upper register does not float gently into the ear
it pounds like someone's pushing a screwdriver in
trying to make it through

that drumming on my brain sound
noise like my head's twenty taiko sound
someone trapped inside working to break out sound
throw yourself against the door
pick up a group of friends to help sound
but it's just
a something being set down on the counter sound
"footfalls tinkled on the tufted floor"
the cat coming down
from up but landing
on her "little cat feet"
like the fog
sound

too much guitar too many guitar sound
electric all sound
those damn drums, seven drummers, talented all, sound
screaming vocalist, reaching fans that could not get tickets
and had to wait outside the venue sound
music, be no more today
and let my ears have peace sound

cat, no more meow
sound
let no one move lest they touch, connect, and create
sound
weather be still
and birds, go to rest
sound, be no more
for every press you make
does not massage and sooth
but commits infanticide
against me
"if music be the food of love"
then let it end as well

of this world create a lifeless wasteland
leave me to lie flat on the ground
up at a grey sky and sunglasses-tinted orb
on top of the still and silent heap
of machines- cars that backfire no more
a desert postapocalypse
upon which to find rest

sound

my body. extended

edit- update 7/12/10

my body. extended

my body. extended
it went beyond its boundaries
and spread itself
over skyscrapers like a multiberry jam

a butter knife
cuts and digs
an anthropological excavation of my bones
from. my flesh
my blood-- drawn out
with lips that seek to save
taking away the poison

anthropomorphizing my animal reality
to make me something human
i would spear my teeth into my foot
detach my foot me from my rest me to find freedom
you seek to make me I
give me voice

my throat remains.
dust and dirt and sand
quenching me
i have been buried
my body beneath my mind my body
animal thinking animal doing
elevation of human rationality

i can solve 2+2 ergo
I am superior

my body. extended
my brain, my body
a piece
corner piece of a 2000 piece jigsaw puzzle
the scientific method
look at the freak
stand her naked as a piece of human like animal

the wild remains
and my body is extended
the trees- my arms
i touch blue
my womb
the ocean
the land
i am mother unto myself
my body is extended to my children

multiple personalities of a loving presence
i falls away
my body extended beyond my body. extended



original
my body.  extended
it went beyond its boundaries
and spread itself
over skyscrapers
like a multiberry
jam

a butter knife
cuts and digs
an anthropological excavation
of my bones
from.  my flesh
my blood-- drawn out
with lips that seek to save
taking away the poison

anthropomorphizing my animal reality
to make me
something- "human"
i would spear my teeth into my foot
detach my foot me from my rest me
to find freedom
you seek to make me I
give me voice

my throat remains.
dust and dirt and sand
quenching me
i have been buried
my body beneath
my mind my body
animal thinking animal doing
elevation of "human" rationality

i can solve 2+2
ergo.
I am superior

my body.  extended
my brain, my body
a piece
corner piece of a 2000 piece jigsaw puzzle
the scientific method
look at the freak
and stand her naked as a piece
of human like animal

the wild remains
and my body is extended
the trees- my arms
i touch blue
my womb
the ocean
the land
i am mother
unto myself
my body is extended to my children

multiple personalities
of a loving presence
i falls away
my body extended beyond my
body.  extended

brief thought

today, it hurt to do qigong. 

when all sinks

when i can't come up with the words
just want to steal a pretty turn of phrase
from some far greater poet
"i almost wiped myself out like grease"
"slid down the sink like butter"
lovely kitchen metaphors that i borrowed
from Michèle Roberts
without so much as asking her leave

want to use grand and glorious words
beautiful spiritual objects that immediately
bring the reader to a peaceful or tumultuous state of mind
i'll speak of the moon shrinking silently across the northern sky
as the cool breeze whispers her loving good nights
i'll want to speak of stars shivering in the distance
but, no, Neruda won't fall pray to by cruel thievery
not tonight, anyway

the heavy clouds release a poison
disguised as autumn rains
and fall upon the colored leaves, the oranges and the reds
they bleed the yellows, the burning browns away
as though it had been dye all along
what fools we were, what goddamn fools
to believe we had known a higher power

i want to quote Alice Walker now
but the stomach for her optimism
was taken away through seppuku
or will be shortly
if you will allow
this painful attempt
to be my death verse

Stress and Pain- they go together like ...

The world has become such an insane place to live.  The oil spill, the Arizona law, hatred against gays.  This hatred towards humans, animals, and our earth is so hurtful-- a literal pain in the neck.

Here's the rub.  When the stress comes on, the pain returns in the worst sense.  Yet, pain brings about more stress.  It continues to escalate until everything becomes too much.

For the first time in months, I took Vicodin.  That hell-broth!  I think my tolerance has decreased-- right away it seemed as though glitter was coming down from the lights.  I made myself ignore them- the little shiny dust particles.  They weren't real, I know. 

How does anyone get through graduate school with constant pain?  I can't focus on this theory-- de Certeau simply brought me to another painful headache.  Nearly a migraine.  Sitting hunched over the computer trying to understand. 

For the first time in a long time, I came to despair today.  It makes me feel Guan Yin (Kannon), she who hears the cries of the world.  The female aspect of Avalokitesvara-- the Dalai Lama.  To feel compassion for all, to try to bear it all- mixing metaphors, like Atlas with the world on his shoulders.  Except that his was punishment.

I try to be religious-- I have such a background in Catholicism.  If Jesus lived as the best a human possibly could and died so horribly, what have I to complain about?  Yet, his was a short pain.  Relatively.

I can't even stick with that image.  It is easy to fail.