How are you feeling?
Pancreatically speaking #4
A question I relied on quite often; perhaps, even still rely on: how are you feeling? It is such a beautifully potential-laden question because feeling is so evasive of a nailās attribution to rigid meaning. Yet I find myself struggling so immensely with the question. As a new member to this term and community of chronic illness, but as a member with my own particularities which make the visibility of my ailment particularly difficult, I rarely know what somebody wants when they ask me how Iām feeling with that particular inflection as to imply you know, with all that unhealth going on with you. I donāt think most are asking this as if they want any particular answer; but, I find myself still as if teetering on knifepoint with my response: Yes, I am still ill; no, I do not particularly feel it so long as I donāt intentionally trigger my symptoms.
This, of course, is the crux of my new life. As Iāve written before, the quality of my life is greatly determined by my adherence to diet and general wellness patterns: am I drinking enough water, am I exercising after meals, am I eating in small, vitamin-rich quantities, do I take my medication which supports the efforts of my failing Pancreas? To say I am diligent is perhaps an understatement. As a result of this diligence, how am I feeling? Well, I am always tired, but who honestly isnāt? Food schedules and access to water are more vital for me than ever, but so long as Iām not ignoring them then the walnut in the left half of my abdomen is mostly silent. Mostly I wish I could just be, well, normal. I wish I could just go get a donut or go out to dinner and not have to have some tremendous dialogue beforehand about the hyper-restrictive fat limitations in a meal. Iām probably drinking too much coffee as that remains one of the few treats my body can handle. How am I feeling?
But what draws me to this question to write about is less the exact and confounding criteria that my body refuses legibility over and more the ways illness is rewriting my ability to perceive neutrality in relatively unassuming questions and statements. Never has my critical mind been more challenged than in this environment where every sentence can be laden with some hidden intent and meaning attempting to discern how close to death I am.
Legibility, through history, is an odd study, and takes its route physically in the application of mass printing, trying to create modern and lasting fonts, typography formats that are both visible and impactful without being overly harsh to a would-be reader. Now, legibility finds some purchase within the metaphors of performance, identity, and self-hood; how easy is it for a friend to see who and what you are? an acquaintance, a stranger?
I do not wish for people to stop perceiving me, either - I think it would be a miserable existence to walk around with everyone pretending as if I were merely normal despite the fact that I have an ongoing test for exactly seven chromosomal mutations which might lead to a discernible cause for my strife (and thereby additional detriments). For, if that were normal, I think more would be walking around the street saying things like howās your coffee today? and which recessive traits are you being tested for today? or was it a large vial or small vial of blood they are borrowing from you today? For what it is worth, when drawing from me, the nurse was very cheerful about how it was just a small, singular vial of blood theyād need.
My therapist likens my new existence to a form of ego death: to become known as ill is to irrevocably erase a portion of yourself once known as healthy. Iāve read about ego death in psychoanalytic studies - wandering case notes by psychoanalysts - and otherwise purely on deep internet holes by people whoāre writing their experiences taking abnormally large quantities of hallucinogenics. Ego death has felt like one of those terms approaching superlative, you know like sublime and paramount, that alludes to a peak on the spectra of perception, enabling a form of exceptionalism and pedestalizing to individuals who otherwise would turn their noses at othersā attempts at pedestals and exceptions for being pedestrian. In the same way how at graduate school parties with literature PhDs I used to use terms like praxis or studies like postmodernism because I felt they allowed my relatively-inexperienced-and-lacking-in-scholarly-value self to participate in conversations with others I inherently perceived as better than myself.
But the literal manifestation is: chronic illness is, in fact, a label not cast to others frequently. In fact, there are very few conditions that can be afflicted to oneself which have enough of a permanent residence to fall within the chronic category. Chronic illness is also a territory that looks remarkably different from case-to-case; thereās an argument to be made between the distinction between disabilities and chronic illness but it feels much akin to arguing the rectangle/square difference.
My particular iteration is even moreso an oddity. I have an illness that afflicts an estimated 200,000 people globally (and this number is really just an estimate based on genomic trends). I have an illness where the primary treatment involves simply living an ascetic lifestyle with minimal-to-no consumption of any of the things which are usually bad for you, where the more I occupy a space of fitness and wellness, the better my outlook is for living more than 10-15 years.
The effect this has on my body is perhaps unsurprising: I have minimal fat and thereby softness, my muscles are growing because Iām eating more protein to maintain energy levels and because Iām working out more to keep my fat being burned; I am thin and physically capable; I am something of an ideal of the United Statesā hyperfixation on the disorder of body-image-integrity. It is jarring to look in a mirror and see my body gaining health in its physicality while knowing that under my skin and under the tendons and muscles and under the veins and arteries and under that thin layer of dust that resides in us all from times immemorial is a small walnut constantly threatening to explode, to shatter and pierce the neighboring organs, to leak bodily acids in uncontrollable means.
How am I feeling? Sometimes I ask this inquiring about the physicality of someone - are they feeling physically able to keep their eyes open or to drive or how is their body after a particular collision in athleticism - whereas others I ask because Iām perceiving some tangible emotion in the lineature of their eyes or the ways their shoulders are sloped or how far forward theyāre leaning. Sometimes I ask this with no bodily-language inferences whatsoever and instead itās simply a text where their previous semantic patterns are varied from what I know of them, and oftentimes with my friends the reason for this is either that they are 75-minutes in to an edible, or that they are depressed.
How am I feeling? Theoretically quite good.
These thumbnails and auto-generated titles are always quite funny to me. My next reading will be tomorrow (Thursday) afternoon, somewhere around 2PM PT.
Iāve also been diligently at work with my contemporary translated poetry index, including:
A new article on how to get started reading translated poetry
Listings for publications, awards, publishers, and translators.
And general improvements to navigability for searching for contemporary poetry in translation by country or language.
I always enjoy the connections you make. The observation of your body and your friends' body language I particularly liked.