JULIA ROSE LEWIS: Against Ethics

Most worthwhile pleasures on this earth slip
between gratifying another and gratifying oneself.
Some would call that an ethics. (Nelson, 2015, p. 43)

I want to attempt to map out the potential for taking ethics as a constraint in order to create experimental poetry. Specifically, I want to look at how biomedical ethics can influence how poets think and write about illness. My poetry repeatedly asks what is gained through a bidirectional exchange between poetry and science, and so it embodies the ways of knowing and thinking about science that a character I will call my interpreter taught me. The following discussion will attempt to imagine the space between gratifying the reader of poetry and gratifying my desire to honor medical ethics. This involves some serious play with life, death, and privacy.

My discussion of medical ethics will refer to the U.S. Health Insurance Portability and Accountability Act (HIPAA). The majority of my experiences as a carer, patient, and student took place in the United States; therefore, these are the rules that guided my discussions of medicine. Doctors, nurses, and administrators are bound by Title II of HIPAA to protect the individually identifiable medical information of their patients. The five rules encoded by these standards of use and dissemination of health care information are as follows: the Privacy Rule, the Transactions and Code Sets Rule, the Security Rule, the Unique Identifiers Rule, and the Enforcement Rule. I am most concerned for my poetry with the implications of the Privacy Rule, which protects and regulates the transmission of patients’ medical information. Often the release of privileged information is mediated by patient consent forms in medical and research contexts. Because I am not a medical professional, I am not bound by HIPPA. Rather, my ethical concerns exist at the personal and epistemological levels.

My proposed research project, tentatively titled Guardian Angel, portrays the kingdom of ill, especially cancer patients and oncologists. I intend to use Polanyi’s theory of personal knowledge as a framework for portraying the art of medicine and the medicine of art. I will put to use what I learned from my interpreter, the diction and syntax of the land of the ill, the customs too, in order to reflect on my own experiences and those of others. My interpreter is my guardian angel. My interpreter was first my interpreter in this kingdom, my translator too, until I learned the customs and the language myself. I have learned by imitating my interpreter, and she has initiated me into the traditions of organic chemistry, medicine, and, finally, ethics. Her mentorship has taught me the value of looking beyond disciplinary and institutional boundaries to use all parts of my life to reflect my research and vice-versa. My interpreter has not merely occupied educational and medical roles in my life; she has translated one domain of experience into the other. She has been my interpreter because she is fluent in the language of the well and the language of the ill. She is the body of the metaphor, her body is her laboratory, it is where she labors. Residing in the kingdom of the ill is a different domain of experience to the land of the well and could be served by the use of metaphor. The bridge is my metaphor for creating a discourse between medicine and poetry.

I intend to use oncology and medicinal chemistry literature to portray the complex relationships between the research and the patients, the molecules and the people. As cancer medicine becomes increasingly personalized and patient-specific, oncologists must adapt their philosophy of treatment. This evolution in oncology makes the disease a sort of problem of ecology; how the cancerous cells interact with their environment which is also the body of a person, making relevant the interplay between the part and the whole, the cancer and the patient. The oncologist must hold both the part and the whole in their heads in order to give the best possible treatment. This is an act of interpretation; the oncologist reads that which is “written on the body [...] a secret code only visible in certain lights: the accumulation of a lifetime gather there. In places the palimpsest is so heavily worked that the letters feel like braille.” (Winterson, 1993, p.89) The patient is a text not only for the oncologist to read, but also for carers, family, and others. Questions of agency, ethics, and privacy arise in the course of reading the patient because of the very ways in which my metaphor breaks down. Patients have the right to privacy as described under HIPPA and people, unlike texts, thinking and feeling agents with complex relationships to their carers and family.

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. (Sontag, 1990, p.3)

The kingdom of the cancer patient has not only its own language, but its own slang, its superstars, its villains, its blankets, its popsicles. Ice chips and popsicles are given to patients prior to and during infusion of some chemotherapeutic agents. The cold causes blood vessels to constrict, lowering the amount of chemotherapy to pass through, and reducing the incidence of mouth sores. Cultural events, such as birthdays, may be interpreted in markedly different ways in the kingdom of ill. A healthy middle aged woman may experience sadness at her loss of youth and beauty; she may perceive her birthday as bringing her one year closer to death. A chronically ill patient may take pride the work they have put into surviving another year; the changing number of their age marking an accomplishment. A terminally ill patient may celebrate this last birthday extravagantly to make up for all the future birthdays that they know will not come to pass. The emotional significance of birthdays is filtered through the person’s life- expectancy as predicted by their health. Simple everyday exchanges between citizens of the kingdom of the ill can proceed quite differently. In the kingdom of the well, the question ‘how are you?’ is usually responded to with ‘fine, how are you?’ This is designed to elicit a response and perpetuate the conversation; the state of the person is assumed to be normal. In the kingdom of the ill, the question would be answered with reference to a symptom or treatment. This answer would be longer and more specific as disclosing and empathizing about symptoms is comparable to discussing the weather in the kingdom of the well. The topic of illness appears rude within the conventions of healthy conversation. The very embodiment of illness, the casualness with which diarrhea is referenced in small talk, can appear too intimate a disclosure to those who are healthy. An asymmetry is introduced to the exchange when the participants are a doctor and patient. In this case, the doctor is soliciting the patient’s account of their internal state to use as a component of their diagnosis. The doctor speaks as a resident of the kingdom of the well, but listens as a resident of the kingdom of the sick; the patient takes the complementary position. It is from these conversations of double consciousness that I hope to write my poetry.

My poetics asks whether it is possible to be specific without slipping into either case history or confessional mode. Theoretically, I feel obliged to acknowledge and attend to both poetic and medical constraints in order to give my project balance and symmetry between its discussion of the two disciplines, because my project is to reflect on how my training as a scientist has influenced my interpretation of cancer and the practice of oncology. Who am I, poet or scientist? My answer is both; I am doubly constrained. One strategy for satisfying the double constraints is metaphor; however, I hope to create other strategies also. “Metaphor provides us with a means for comprehending domains of experience that do not have a preconceptual structure of their own. A great many of our domains of experience are like this. Comprehending experience via metaphor is one of the great triumphs of the human mind. Much of rational thought involves using metaphoric models. Any adequate account of rationality must account for the use of imagination and much of imagination consists of metaphorical reasoning.” (Lakoff, 1987, p.303) I mean to carry over my experience into another domain of experience, to interpret through poetry rather than to transcribe into line breaks, rhyme, and meter; as such, my translation will rely heavily on metaphor. The process of translating my experience with my interpreter into poetry will itself serve to protect my interpreter and neutralize my ethics problem.

However “it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped [...] [i]t is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.” (Sontag, 1990, p.4) While I disagree with Sontag that it is possible to escape from metaphors, I believe that a thorough elucidation of illness as a metaphor is a vital step in revising our understanding of illness. My poetry will deploy current and novel metaphors for illnesses in order to help readers of poetry to discuss and engage, with the further goal of opening a dialogue between literary and medical professionals. Such a poetry, although liminal, might function as a common text for humanists and scientists. Poets and literary critics have expertise in the creation and analysis of metaphors; while doctors and scientists have expertise in designing clinical trials and treating patients. My intention is to open up a space for bi-directional exchange between the two discourses. To return to the metaphor of building a bridge between the two disciplines, I am beginning at both sides and working my way towards the center. The purpose of building from both directions simultaneously is to balance and to honor equally the contributions of both disciplines. My intention is to let the two approach each other, to allow for necessary repositioning of one discourse with respect to the other.

The George or the Tap?

Which bridge also depends on the direction of travel.

Always argue this point of navigation. Of course, our conversation stays between us. Also between us, I would like to write about our miracle, but in a way that would not violate her privacy.

This will require a different sort of poetics than the usual cancer writing, neither confessional, nor elegy. She is elegant. Neither the George nor the Tap, but a local bridge seems more fitting for a minor literature. Not a portrait of a great woman, because you are right it would not be right.

Rather a poem informed by her biochemistry, her organic chemistry, an experimental poem. To write the most elegant synthesis I can manage. To synthesize the desired molecule and test its biological activity: it may be the next taxotere, it may prove terribly toxic. The risk of experimentation is failure. The results may be negative as unpublishable as a poem that does no work. Failure plus faith equals ethics. Per faith, I trust that I will learn equally well from either.

Here I am trying to feel out what form such a poem might take in order to keep faithful to our experience our miracle.

The details are in the molecules themselves, not the rash or the eyelashes. “By watching the master and emulating his efforts in the presence of his example, the apprentice unconsciously picks up the rules of the art, including those which are not explicitly known to the master himself. These hidden rules can be assimilated only by a person who surrenders himself to that extent uncritically in the imitation of another. A society which wants to preserve a fund of personal knowledge must submit to tradition.” (Polanyi, 1958, p. 53) I imitate her. Carrying over my organic chemistry experience, can I scale up the reaction?

Perhaps we are approaching it here?

Even the good poetry about cancer is all confessional and morbid. My experience is that my ethics problem shared her passion for science and medicine with me. In order to write faithfully about my experience knowing her, I want to write about what she taught me, her faith in science and medicine. It will most certainly be an experimental poem.

Works Cited

Lakoff, George. 1987. Women, Fire, and Dangerous Things: What Categories Reveal about the Mind. Chicago: University of Chicago Press.

Nelson, Maggie. 2015. The Argonauts. Minneapolis, MN: Graywolf Press.
Polanyi, Michael. 1958. Personal Knowledge; towards a Post-Critical Philosophy. Chicago:

University of Chicago Press.

Secretary, HHS Office of the. 2008. “Summary of the HIPAA Privacy Rule.” HHS.gov. July. https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html.

Sontag, Susan, and Susan Sontag. 1990. Illness as Metaphor ; and, AIDS and Its Metaphors. New York: Doubleday.

Winterson, Jeanette. 1993. Written on the Body. New York: Knopf.

 

Julia Rose Lewis is working on a PhD in poetry at Cardiff University.  Her poems have appeared in the Moors Poetry Collective anthologies, 3am Magazine, Poetry Wales, and Missing Slate.  Zarf Poetry published her chapbook, Zeroing Event (2016).  Finishing Line Press will publish her chapbook, Exhalation Halves Lambda, in 2017

 

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