Tag Archives: Lyme Disease

Prospectus Success!

It has been over a month since I’ve written on this blog, and thanks to some higher power/luck, I BECAME A PhD CANDIDATE ON WEDNESDAY, APRIL 27TH!

But you might ask: What happened with your prospectus/dissertation proposal, that thing you spent so many weeks agonizing over? Well, to be honest, I got caught up in the day-to-day rush that always happens at the end of the semester and I took a break from my prospectus after submitting it to my committee for review.  Although the prospectus meeting is collaborative, it’s mainly a space for my committee to debate the viability of my project–and after I submitted my prospectus, I felt like I had no control over it. No ownership, even. Like all of my best work thus far, I knew it was going to be sort of co-authored! So I took a step back. My partner and I rejoined the YMCA. I watched Netflix and Hulu at night after work. I spent too many hours responding to those “I’m in a crisis”-end-of-semester emails. I hosted a huge Passover seder, ate dinner at my favorite restaurants, and planned some short vacations for the summer. I met with students, attended follow-up meetings for the interdisciplinary study I am working on, and went to trivia night with friends. I played with my cat, who is now more spoiled than ever and is demanding pets and trying to drink my tea as I type this. I didn’t return to my prospectus until the night before my prospectus defense…which was probably a bad idea, but I couldn’t bring myself to critique it again. I figured it would change a lot at the meeting, so it wouldn’t be helpful for me to overthink it instead of sleeping that night.

At the 1.5 hour meeting, my prospectus did change…but not as much as I expected. Going into the meeting, I was sure that my prospectus was a mess. Even though both of my advisers had read and commented on multiple drafts, I still felt unprepared. I was sure my committee would tear my revised prospectus apart and then stitch it back together. This happened with my first and second chapters, which I’m now going to combine…but my other chapters stayed somewhat the same. It turns out that my committee was not particularly compelled by my traditional rhetorical analysis chapter, in which I planned to examine scientific literature reviews to show how scientific knowledge about Lyme Disease (including naming) is constructed. At my oral exam/defense, my committee was worried that my project sounded too social science-y and not obviously rhetorical enough. However, at this meeting, the committee was excited by my use of innovative, interdisciplinary methods and encouraged me to keep them in the project. (Re: VISUAL ETHNOGRAPHY is here to stay!)

At the defense, one of the questions that my committee kept asking was, “What is this really about? Is this a dissertation about rhetoric? Lyme Disease? Illness identities? In what order do these things happen?” My one co-adviser has advocated that I make the book more about Lyme Disease, since the press that published her recent book about Autism told her that a text with a disease focus (vs. a rhetoric focus) would attract a larger audience. Her book is still about rhetoric, of course, but it forefronts Autism instead of rhetoric. After this meeting, it seems like my project is really about how health seekers construct illness identities, and that studying Lyme Disease communities is a case study of how that happens. I think.

There is still so much to panic about: How did I propose a dissertation with so many digital elements? What if the focus groups fail? How am I actually going to WRITE 200 pages that make sense? BUT, conveniently, I am giving myself a break for a week or two to focus on other tasks. Here’s the short list:

  1. Write and submit a seminar paper for my Communication class…which is due on Friday…and I haven’t written any words for it yet.
  2. Assist with WID training on 5/6.
  3. Assist with my TA class’s final exam conference on 5/6.
  4. Finish any final Writing Diabetes follow-up appointments (hopefully by 5/6).
  5. Help submit my group’s 4C17 proposal by 5/9.
  6. Write and submit a chapter (or something) for the RSA Embodied Rhetorics workshop I got into by 5/14. I was planning that this would be the same as my conference paper for COMM, but…???
  7. Finish revising, get feedback, and submit article accepted for the special issue of JMH to the editors by 6/1.

With that, I guess it’s time to start writing!

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Organizing My Dissertation Project

There are so many possible ways to conceptualize my dissertation project. It’s exciting to feel like there are so many possibilities, but it’s also overwhelming. What direction(s) do I want to go in? What’s my justification for making this choice? How will this choice frame the project in a useful way for the field? The issue is that I just need to pick SOMETHING. It doesn’t have to be perfect–merely workable–so that I can finish the prospectus and submit it to my advisers…and I had planned to finish it yesterday. (Instead, I napped, played with my cat, and ate delicious pizza from the new pizza truck down the street. Relatively restful, but…yikes).

I’m a writer who likes to have a clear outline from the beginning, which is why I think I’m having so much trouble moving this forward. I know that I will likely change the outline and/or frameworks and quite possibly the chapters, too, but it’s practically impossible for me to start without some semblance of…something. (Also, my cat is high on catnip and making the weirdest sounds…. Not helpful). When my students find themselves in similar situations, I encourage them to “just pick SOMETHING” and get started, since the project is usually relative short in length and the timeframe for completing it is limited. My dissertation project is theoretically bounded, too, but it’s so much bigger and broader and feels like it means so much more. I’ll probably write about most of the same things regardless of the frame I choose, but…UGHHHHHH.

So here are some of my ideas for organizing things….

Idea #1: rhetorical research methods

Introduction: rhetoric of health and medicine –> LD is an interesting case study –> necessitates that we broaden archives and research methods

Chapter 1: “traditional” deep rhetorical analysis of alphabetic text – naming and constructing LD through peer-reviewed scientific journal articles; language = evidence

Chapter 2: visual rhetorical analysis – LD images; images = evidence

Chapter 3: rhetorical circulation studies – examining online social spaces where people with LD collaborate and strategize to  create community and get better care; moving beyond Gries’s circulation of one image to think about the construction/production/distribution of multiple (seemingly) static images; language and questions (?) = evidence

Note: Is this more of a virtual in situ study?

Chapter 4: semi-structured interviews – interview LD health seekers in the south (North Carolina) to learn about experience and possibility of disability identity; interview language and ideas = evidence

 

Idea #2: patient/activist vs. clinician-researcher/biomedical authority for learning about emergent illnesses

Introduction: rhetoric of health and medicine –> LD is an interesting case study –> construction of ethos –> evidence and authority (see ch. 7 of Segal’s Health and the Rhetoric of Medicine, 2005)

–> IDSA vs. ILADS discourse – the rhetorical problems with LD

Chapter 1: biomedical = what counts as evidence (maps, bull’s-eyes, ticks, spirochetes) vs. “subjective symptoms”

Chapter 2: biomedical = LLMDS – developing LD knowledge/authority through perceived “Lyme literacy”

(Note: not sure which archive I’m going to use here).

Chapter 3: patient/health-seeker = uninterrogated history of LD as a patient’s disease via Connecticut moms who reported it to the CDC and studied their ill neighbors and children; newspaper articles and popular publications (i.e. books by LD patients/witnesses)

Chapter 4: patient/health-seeker = crowdsourcing knowledge via online social networks; examining online social spaces where people with LD collaborate and strategize to  create community and get better care

Note: Putting patient/health seeker and clinician/researcher/biomedicine in opposition feels a little bit arbitrary or simplistic. 

 

Idea #3: stages of illness

Introduction: rhetoric of health and medicine –> LD is an interesting case study –> tells us a lot about rhetoric and emergent illnesses following the HIV/AIDS crisis

Chapter 1: diagnosis = rhetorical analysis of changing diagnostic guidelines

Chapter 2: treatment =naming and constructing LD through peer-reviewed scientific journal articles

Chapter 3: recovery = examining online social spaces where people with LD collaborate and strategize to  create community and get better care

Chapter 4:

A) prevention = visual analysis of LD prevention ephemera, such as posters and brochures? IDSA vs. ILADS materials?

OR

B) disability = questioning the chronicity/permanence of the condition via interviews?

 

WHEW. So much to think about. Time for a cup of tea…or a nap….

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Questioning the Lyme Disease Dissertation Project

I’ve been working on finalizing my dissertation proposal for a few weeks now, and I keep having crises of ideas. Despite wonderful support from my friends, parents, #TeamRhetoric colleagues, and advisers, I remain tormented by the following questions:

Should I make Lyme Disease the focus of my study, or is that too limiting? My adviser is probably right when she says that a book about Lyme Disease, like Autism or another particular condition, may be attractive to presses because it will interest a specific population of people and thus might be more marketable. However, I can’t even think that far ahead right now. I’ve read so many articles on the ChronicleVita, and in other places about affirming that your dissertation is NOT a book and that it may not become a book, so even though my advisers think the project is promising in its current form, it’s still hard to imagine it transitioning into a book.

Is it rhetorical enough? WHAT IS RHETORIC? Why am I using rhetoric as a method and lens for analysis? Much of the research about chronic illness, gendered experiences with illness, the value of patient narratives, etc. is coming out of medical sociology and anthropology, social history, history of science and medicine, etc. I know that rhetoric, which studies how arguments are constructed and thus create ways of knowing and making meaning, is a useful way of looking at data. (By “data,” I mean any ideas, facts, or knowledge that can be investigated as a way of answering a question–which can range from narratives to images to lab tests). BUT STILL. I think what might be confusing me is that scholars and activists from these fields are trying to show how constructed–i.e. not natural–these illness things are, and that’s pretty much what rhetoricians do, so I don’t want to feel like I’m repeating work that’s already been done. I’d like to believe that rhetoricians’ perspectives bring something unique to the table, but thus far it has been difficult to parse.

What archives or primary materials am I going to investigate to make claims, and which methods will I use? When I first started investigating the health and medical humanities, I thought their methods were engaging and presented new and exciting opportunities for rhetorical scholarship. Now, however, I have to be careful that my project will be “read” as rhetorical to future job committees and tenure committees, which is forcing me to reconsider some of my (seemingly) radical methods. I spent a lot of time trying to justify why visual ethnography would make for a compelling rhetorical research method (building off of McNely et al.’s work), but I have long since moved away from the *justification* piece. If I’m going to include nontraditional research methods, I will have to spend time and space justifying it…which means that I need to figure out a) what methods I’m going to incorporate, and b) WHY they’re going to be useful and illuminate something new and exciting and different. Again, although I spent so much time toying with this visual ethnography thing, I haven’t figured out if or how it is going to work and what it might do that might be helpful.

It’s funny how these things work out. My undergraduate rhetorical education focused on feminist rhetorical history. I have since moved away from this focus during graduate school for a variety of reasons, but it’s easy to want to return to those methods because I already know how to do them. For example, I could study local and national newspaper articles to chart a revised history of the emergence of LD, which was “discovered” by researchers at Yale…who never really credited the two mothers from Lyme, CT who alerted them to the phenomena. These mothers, Polly Murray and Judith Mensch, are sometimes named in popular publications, but according to some quick researchers, never in peer-reviewed scientific ones (i.e. http://www.nytimes.com/1997/08/10/nyregion/taking-a-new-tack-against-lyme-disease.html). This gets particularly interesting because there has been some research about the sexual and in utero transfer of LD (http://www.scientificamerican.com/article/mothers-may-pass-lyme-disease-to-children-in-the-womb/), which makes me think a lot about the rhetorical characters of LD and how they have informed the LD controversy as we know it. Some sources I’ve read have argued that because LD was discovered by patients and wasn’t easily figured out by researchers of clinicians, it is deeply grounded in community efforts and thus doesn’t easily become the authority of researchers, unlike in many other cases.

Relatedly, I’ve also come upon another conundrum: If chronically ill people with controversial/emergent illnesses are doing collective action work in certain places already, WHY THE F— AM I GOING TO DO MY OWN STUDY?!  Not accounting for and valuing the work people are already doing and doing my own study instead seems to contradict everything I believe about valuing patient narratives and experiences.My preliminary research/internet perusing suggests that ill individuals are hashtagging #LymeDisease, #spoonies, #chronicpain, #chronicillness, and other terms on Twitter and Instagram (and probably other places) to visually and textually document their experiences and get community support. I’m sure there’s more out there, but I’m hesitant to jump in with both feet. What worries me about using social media as a research archive is that it seems ephemeral and might not matter in a few years. (Truthfully, I’m concerned that it will be meaningless by the time I try to publish a book). However, other people (per this Slate article from the other day – http://www.slate.com/articles/technology/users/2016/03/how_spoonies_people_with_chronic_illnesses_use_memes_selfies_and_emojis.html) are taking it seriously, so perhaps I should, too. I guess what’s been hard is that my early searches have been hard to “code,” meaning that sometimes it seems like people are  using these hashtags to gain social capital to sell something or as spam versus using it to build or enter into an illness community. My adviser suggested an interesting solution: come up with a key term or concept to help me “read” (i.e. organize, generate meaning, analyzed) these materials. For example: disability. I could look at all of the Instagram posts with a #LymeDisease tag and try to answer the question, “How do LD patients construct (or not) a disability identity?” With inquiries by disability studies scholars like Alison Kafer about who “counts” as disabled, what terms individuals with disability should or should not take up, and more, I’d like to work on answering this question as part of my dissertation. However, I feel uneasy about using social media to answer it. I could certainly conduct some qualitative interviews with individuals with LD in North Carolina and study them for similar themes. There is very little qualitative research about Lyme Disease AND very little research about Lyme in the American south, so I would certainly be generating new knowledge, but that also doesn’t feel quite right to me.

This has prompted me to consider if I should incorporate digital humanities research tools and methods into the project. LD is very much geographically bound–socially and environmentally–but should I go there?

What ideas might I use for peer-reviewed journal articles vs. THE DISSERTATION? This might seem insignificant, but I think that some of my inner chaos come from trying to narrow my focus for the dissertation but finding perfectly useful, bounded projects that might be interesting to pursue but that don’t fit in the realm of my current project outline. For instance, there are various health poster collections that are perfectly suited for rhetorical and visual analysis, but if they’re not about LD, they probably aren’t a great fit for my dissertation unless I’m directly connecting them back or comparing them with LD ephemera.

***

To begin answering some of these questions, I started playing around (i.e. “researching). I made the following list:

Possibilities for Archives/Materials:

  • Peer-reviewed scientific journal articles about Chronic Lyme Disease/Post-Treatment LD à learn about the emergence of LLMDs and the rhetorical problem of “Chronic Lyme”
  • Interviews?
  • Arts-based therapy ephemera?
  • Hash tag activism on Tumblr, Instagram, and/or Twitter à and/or ChronicBabe.com
    • Leveraging gender and chronic illness – pushing back against traditional patriarchal authorities
    • Femininity as radical, rhetorical reclaiming of authority and identity à paper I wrote for Jane’s seminar

This led me to think about Judith Lorber’s Gender and the Social Construction of Illness, so I used Google Scholar to figure out who had cited her (almost 500 people) and then, with that sect, who had also used the term”rhetoric” in their publication. Here’s a few I came up with:

  • Werner, Anne, and Kirsti Malterud. “It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors.” Social science & medicine 57.8 (2003): 1409-1419.
  • Sim, Julius, and Sue Madden. “Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies.” Social science & medicine 67.1 (2008): 57-67.
  • Willard, Barbara E. “Feminist interventions in biomedical discourse: An analysis of the rhetoric of integrative medicine.” Women’s Studies in Communication 28.1 (2005): 115-148.
  • Bell, Mebbie. “Re/forming the anorexic “prisoner”: Inpatient medical treatment as the return to panoptic femininity.” Cultural Studies↔ Critical Methodologies 6.2 (2006): 282-307.
  • Clarke, Adele E., and Janet Shim. “Medicalization and biomedicalization revisited: Technoscience and transformations of health, illness and American medicine.” Handbook of the sociology of health, illness, and healing. Springer New York, 2011. 173-199.

Note: I got up and got a snack, but I still managed to bite off all my nails. :-/

I’m not sure where it will go from here, but I told my advisers that I’d figure it out by Sunday night…. AHHH!

 

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Revising Lyme Disease: When and Where the Work Happens

My students are peer-reviewing the final versions of their final projects today, and I’m revising and reviewing my chapter draft (my pre-dissertation prospectus plan). It’s funny how these things happen. I find revision to be one of the most trying parts of the writing process, so if nothing else, I can sympathize about the pain of it all. I’ve worked so hard on this, so why do I have to reread it? What if what I’ve written is shitty and doesn’t make any sense–is it too late to change it now? WHEN WILL THIS (PART OF THE) F-ING PROJECT BE OVER?!

Unfortunately, it’s never really over. If I’ve learned anything about building knowledge in the academy over the past seven years, it’s that we’re always in the process of revising and resubmitting. We submit our best possible version of a project (well, that’s the hope) to a journal, and then reviewers send back comments to help us move forward. We respond to those comments and resubmit it, only to be forced to revise even more carefully, picking out finicky grammatical errors and fixing the ones the professional editors have caught for us. I find that I’m someone who regroups at all stages of the writing process, often soliciting feedback from different people to get different ideas. At the beginning, I usually query my parents, partner, and #TeamRhetoric friends to figure out if the idea is worth pursuing. I then go to my advisers and committee members…or sometimes I jump right in and wait to talk with them until I run up against a problem. Or many problems. There’s always a horrible moment in the midst of composing when I wonder, “Is this even rhetorical? Why am I doing this? Does anyone care?” These questions can really shake my confidence, but thankfully a brief consult with #TeamRhetoric during writing group or a quick phone call to some of my colleagues who have since graduated Carolina can put my mind at ease. (For the next few hours, at least).

What I’ve learned through these challenges is that being challenged is part of the process of doing interesting, conversation-joining, possibly paradigm-shifting intellectual work. Although I do the physical work of writing on my computer when I’m typing in Word or Google docs, searching digital or print archives, taking notes when I’m talking to people smarter than me about what they’re doing or what I’m doing, it’s the work in my brain that’s the hardest to move through. I ponder over questions such as “Is this really about x or is it actually about y?” and “My god, what does this all MEAN?! Is it actually meaningful or just a weird coincidence?” and “What does this DO for…my audience of the moment?” when I’m in my kitchen, baking brownies that don’t come out of the pan, or even in the shower, when playing with my cat on the living room floor, or sitting on the bus on the way to campus.

So where does the work happen? Anyplace and everyplace. Hopefully more of the time than less of the time. (I’ve posted an example of what some of it looks like below). No matter what part of the process you’re in, I’m sending positive thoughts your way!

Screen Shot 2016-03-10 at 12.02.05 PM

Image Description: Screenshot of a Microsoft Word Document depicting a page with a chart on it and blue comments and highlights.

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Cutting and Pasting My Prospectus

So I survived my comprehensive exams. Or at least parts 1 and 2 of 3. In case you’re thinking about going to PhD school and need a reason not to, here’s a description of my exam process:

  • Part I: six 1-hour essay questions about rhetoric, composition, and literacy studies, my major field, 9:00am-4:00pm (which is supposed to allow you a 1-hour lunch break…which I clearly couldn’t take)
  • Part II: three 1-hour essay questions about health humanities, my minor field, 9:00am-12:00pm (I think–I guess it would be good to double check this since it’s happening this coming Tuesday)
  • Part III: 2-hour oral exam (two Fridays from now!)

The unspoken Part IV is the prospectus defense, which is really a meeting about your dissertation proposal and whether or not it’s feasible. (We call a dissertation proposal a “prospectus.” My partner Nick thinks this sounds very uppity, but I didn’t make it up, so…). As my dad said to me on the phone yesterday, earning a PhD isn’t supposed to be easy and that doing so requires critical thinking and answering difficult questions. But, as I replied, that doesn’t mean it’s not challenging!

IN ANY CASE, I am now (somewhat frantically) cutting and pasting pieces of my prospectus drafts in order to assemble a somewhat reasonable prospectus. This is what it currently looks like:

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The different colors represent different versions that I’ve written. You can see that I’ve even outlined the “new” organization scheme at the top…which is great but challenging since I’m working with at least three versions that are each in a different order… UGH. Today is a snow day, and I need to use it to my advantage, i.e. get a full draft together by THIS FRIDAY so that I can send it out to my co-directors for initial comments. I need to have printed-and-read-to-go copies for my entire committee by next Friday, 2/26, which is my oral exam meeting. (I guess I should also book a room for that…sigh).

**Okay, I booked the room now so I guess it’s time to get back to work.**

Anyway, back to the prospectus puzzle… stay warm!

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Revising Lyme Research Questions

One of my wise advisers from my days as an undergraduate at University of Maryland recently gave me some important advice. As usual, I was complaining about my various projects, particularly about my inability to select useful and appropriate research methods. My adviser said something to this effect: “Why don’t you figure out your research questions before you select your research methods? You can’t figure out how to answer the questions until you’ve chosen them.” SO SIMPLE, YET SO BRILLIANT. (I guess this is why we have advisers). In turn: I’m writing this post because the time has come for me to really nail down my research questions (at least for my dissertation proposal. I know that they will change along the way, but I can’t get the proposal approved without a version of these questions, so here goes…).

I have been working on these questions for some time. Almost a year, in fact. When I teach my students about the research process, they are always frustrated by my assertion that research IS a process–one that is recursive, reflexive, and constantly evolving. (I mean, it’s called “re-search” for a reason!) However, none of that means that the research process isn’t frustrating. It’s hard to keep coming up with versions of the same questions (and some new ones), but hopefully my questions get better and better as I continue to revise them. Here are a few versions:

April 2015:

  • What does it mean to receive a Lyme disease diagnosis?
  • What does that diagnosis allow/not allow? Legitimize/not legitimize?
  • Who is able to receive a diagnosis, and who is not?
  • What do you have to know about lyme in order to self-advocate or receive appropriate treatments?
    • If diagnosis matters so much, what are we to do if we feel that our healthcare providers have misdiagnosed us?
  • In general, what does it mean to have a chronic condition or to live as a chronically ill person? What kinds of evidence are required for women’s chronic illness symptoms to be believed or taken seriously?
  • How do women’s stories complicate our understanding of how they navigate the world while living with disease?
  • When disease names and language change, what happens?
  • How is illness language being turned and nuanced?
  • When ill women are given access to communicate (i.e. online?), what happens?
  • What kinds of rhetorical strategies do chronically ill women adopt to navigate their illness experiences? What kinds of illness language do ill people, scientific, and public communities create, and how does it influence the ways patients are cared for and treated?

July 2015:

  • KEY QUESTION: What is the (if any?) rhetoricity of being “chronic,” and how can chronically ill people (specifically women) leverage their diagnoses, treatments, and long-term care to their advantage (i.e. to get the least harmful, most effective treatments and experiences)?
  • How does a diagnosis change the ways in which an ill person lives, perceives, acts out, and discusses publicly their symptoms/condition?
  • For whom is a diagnosis important, and what does it do? (Patients vs. doctors vs. insurance companies vs. big pharma, etc.).
  • How do patients weigh the risks of particular treatments? (Meaning, when the list of side effects is longer than the list of benefits on FDA-approved medication, why might patients choose to take/not take them?)
  • How are treatments framed differently for individuals with chronic conditions? What does it mean for patients to be treated for psychiatric conditions that occur as a result of chronic illness (forever marking them as individuals with mental disorders)?
  • How do chronically ill people sustain themselves even when there is no hope for recovery? How are traditional conceptions of “cure” and “recovery” reframed for the chronic patient?

October 2015:

  • What does Lyme Disease look like? (And how does this affect who is diagnosed with it–and appropriately treated–and when?)
  • Who circulates images of Lyme Disease? What does the circulation network look like?
  • How do Lyme Disease diagnosis health-seekers/patients envision their connection to Lyme? How do they document their experiences of Lyme, if at all? (Or other ambiguous chronic illness/condition).
  • How do clinicians who diagnose Lyme Disease and researchers who do experiments to learn more about Lyme Disease *see* it–in the lab, in the treatment center, in the exam room? How do these images circulate?
  • What is the history of images of Lyme Disease and their connection to diagnosis?
  • And of course…How do Lyme Disease visuals function rhetorically, particularly in diagnosis situations? How might images/visuals be effective argumentative tools for presenting new ideas/shifting the focusing/reevaluating the stakes of Lyme Disease diagnosis?

November 2015:

  • What is the origin of the standard Lyme Disease images, and how have they molded and circulated between professional and patient communities?
  • In the midst of complex arguments about how long the Lyme infection remains active and if intravenous antibiotics cause more side-effects than healing, four standard images accompany discussions from all ideological perspectives: one or more ticks, EM rashes, Lyme spirochetes, and maps that chart Lyme diagnoses across the United States. Why d0 these images continue to be taken up and recirculated?  How have they have played a covert but significant role in making paradoxical claims about Lyme persuasive?
  • How might visual ethnography reveal new complexities in the diagnosis, treatment, and recovery from Lyme Disease? What happens when we ask integral but invisible stakeholders (i.e. Lyme patients) to become producers of visual discourse about Lyme?
  • How might visual ethnography create new images that provide an alternative, patient-centered perspective on the condition?
  • How might  language, objects, and social actions (including scientific “facts”) function as persuasive tools (which are inherently impartial)?
  • How might a rhetorical analysis of the visual rhetoric of Lyme Disease offer new ways to understand a condition that science of medicine have not yet figured out?
  • How have (and how do) images of Lyme Disease shape(d) popular, medical, and scientific discourses and the practices of Lyme diagnosis, treatment, and recovery?

As you can see, this project has already gone through many shifts…and I haven’t officially started it yet. I guess I should also think about my intended interventions:

  1. Lyme Disease–like many other (particularly controversial conditions and diseases)–is rhetorically constructed. This impacts health seekers’ diagnosis, treatment, and recovery, as well as the ways that knowledge about the disease is constructed, circulated, and contested.
  2. Analyzing visuals (i.e. through visual rhetorical analysis) can help us understand Lyme (and other conditions and diseases) as rhetorical phenomenons. As Jeanne Fahnestock argued in her groundbreaking book, Rhetorical Figures in Science, linguistic figures of speech translate to visual figures in scientific writing.
  3. Guiding Lyme health seekers through the creation of their own images through participant-solicited visual ethnography and digital storytelling (?????) allows them to intervene and perhaps make a difference in Lyme Disease knowledge production. (TBD if I do some kind of study. We shall see?)

I guess I need to go back through and narrow down/select which questions will work for me…but since it’s almost 4:00pm, I guess I should shower or exercise… To be continued!

 

 

 

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To do a study or not to do a study?

I had a very productive meeting with some Lyme Disease researchers during winter “break.”Although I found the travel and rushing around to be exhausting, I was thrilled to learn a few game-changing things:

  1. No one has published a peer-reviewed journal article about the rhetoric of Lyme Disease, probably because it is too political.
  2. Very little is known* about Lyme Disease in communities that are impoverished, rural, and/or predominantly made up of people of color. Umm…WHAT?! I guess this shouldn’t surprise me, since the clinics that specifically treat Lyme tend to be located in wealthy, white-majority (sub)urban areas that are not easily accessible by public transportation. (Or at least they are based on my initial observations). Moreover, according to these researchers, Lyme study participants are often recruited from these same communities and thus tend to be white, upper-middle class or wealthy, possibly Jewish, and well connected. (Or at least that’s how I interpreted it. They are people with many social and economic privileges. Much like me).
  3. At this point, there is very little qualitative research about Lyme Disease and/or the human experience of being diagnosed with, treated for, and/or suffering from Lyme Disease.
  4. Visual ethnography workshops could be a promising intervention to improve the quality of life of Post-Treatment Lyme Disease Syndrome (PTLDS) patients, particularly if they are inexpensive and could be facilitated digitally.

Based on this meeting, the most important intervention I could make is writing a clear, well-researched, judiciously worded article about the rhetoric of Lyme Disease and publishing it in Health Affairs or anther similar journal. The visual ethnography thing is an interesting possibility, but it is not as interesting nor as urgent as writing about the rhetoric of Lyme Disease.

This puts me in a challenging position. Where should I begin? How should I spend my time? What is most important and for whom? 

Originally, I imagined that I would run a pilot study to test my (still developing) hypothesis: Participating in a participant-solicited photography/digital storytelling workshop will improve the quality of life of PTLDS participants–at least according to some clinical self-assessments. (I need to work on my phrasing. Yikes). However, this might  be too ambitious for me to attempt at this moment in my career. Aside from studying for my exams and watching Netflix, I’ve been helping Jen get the HHIVE Lab Writing Diabetes Study running… There is so much to do. I have no idea how so many emails would get sent, binders would be ordered, posters would be proofread, IRB revisions would be completed, etc. without our fellow team members, each of whom brings ideas, talents, and key social connections to the project. We are being funded by a UNC FIRE Grant. If I attempt this visual ethnography project on my own–without human resources, without funding, without space, without an enormous amount of time–will I be able to get it off the ground? Just thinking about the little things, such as how will I acquire a phone number/line for recruiting patients (?) and where will I hold the consenting sessions (?), is overwhelming. A few short weeks ago, I was planning to leave campus for the fall semester (or something?) and conduct the workshops in Maryland, since Lyme is much more common there…and make it all happen. Magically. Now, I still believe that visual ethnography is a useful line of inquiry to pursue, but I need to rethink whether or  not I am going to hold an in-person workshop, how I am going to afford it, where I might hold it, etc.

SO MUCH TO CONSIDER. TWO MONTHS TO DECIDE. (Or at least make preliminary decisions so that I can pass my dissertation prospectus defense). To be continued…


*What I mean by this is that very little is known about Lyme Disease in these communities in the peer-reviewed research world. Knowledge about Lyme Disease–truths, stories, lived experiences, ideas, connections–circulates in internet forums, magazine and newspaper articles, youtube videos, art, and more. However, in the medical and scientific communities, the most important (and arguably trustworthy) knowledge comes out of clinical studies, the results of which are published in field-specific journals that are evaluated for accuracy by fellow medical and scientific professionals (i.e. they are “peer-reviewed”). In my opinion (as a budding researcher), the only way to combine these branches of knowledge is to study diverse sources of knowledge-making (such as blogs, Instagram posts, newspaper articles, interviews, etc.) in a scientific way and publish the results in medical and scientific journals. It would also help if all peer-reviewed journals were freely accessible and if the journal articles were written with less jargon so that non-specialists could both access and make sense of them.

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On Being in Pain

Happy 2016! I have taken a short respite from updating this blog to celebrate the winter holidays and prepare for my PhD exams (called “qualifying exams” or “comprehensive exams” depending on the institution). Perhaps this is a diversion, but studying for exams and attempting to put together my dissertation proposal have been very difficult, and I’d like to use this entry to discuss reading, writing, and thinking while living with chronic illness.

I had a productive meeting with some Lyme researchers over the break, and as I look over my notes, one subtle thing continues to stand out: to do this work–to work with desperate, exhausted, frustrated chronically ill people–you have to distance yourself from their pain. The researchers argued that this is necessary to maintain focus on the questions at hand, which makes sense, but also to preserve yourself emotionally. The problem for me, of course, is that I feel the same (or very similar) physical and emotional pain as my future research participants. I have encountered (and attempted to work through) my own pain at every stage of the research process. Like other Lyme sufferers, I continue to hope that my pain will magically disappear…but it doesn’t. For me, some days are good. I can keep calm and focus for hours, reveling in insights from texts and easily putting them into conversation with one another. And yet writing with pain is as intolerable and unproductive as studying with pain, and these do not make for delightful days of writing proposals and preparing for exams.

For me, this is what it’s like on a “bad” day:

  • I sit down (usually in the morning) to begin reading texts on my exam list or practice answering sample exam questions. I feel uneasy, probably because all of it feels so high stakes, but I remind myself that I CAN do it and proceed.
  • Within 15 minutes, I can’t keep still. I am uncomfortable, but I can’t figure out where the discomfort is coming from, what kind of discomfort I am experiencing (arching, burning, electric/nerve pain, etc.), and if it’s severe enough to be treated with medication. After all, I’m uncomfortable. Isn’t everyone a little bit uncomfortable sometimes?
  • I get distracted. Am I hungry or bored? Am I tired? Why is my mind racing? Why can’t I focus? I’m never going to pass these exams. I know I can, at least in theory, but I can’t sit still. Things feel out of balance. I feel incompetent. I feel like it’s all my fault.
  • I pace my living room. I try to do yoga. I eat another snack. I leave the house for a short break. I take a nap. I call someone.
  • I am discouraged and achy and cranky and frustrated and embarrassed and want to hide under my bed. I can’t figure out what’s “wrong” with me. I want it all to go away.
  • I give up and hope that tomorrow will be better.

I have had MANY bad days recently. The weather has been horrible–humid, rainy for days on end, dark, uninviting–which aggravates my pain and discourages me from leaving my house. I won’t shower and get out until I get X arbitrary things done, I tell myself, only to not shower for two days and prompt my partner to ask me why I smell like a ripe banana….

It’s cyclical. It’s terrible. It makes me feel hopeless. Like I’ll never pass my exams. Like I’ll never be able to write a dissertation. And I can’t separate myself from it. I know that everyone has bad days, and since this is my “normal,” I hesitate to claim that mine are worse than anyone else’s. Now, a reasonable follow-up question would be, “Why don’t you just take your medication?” Well…it’s complicated. My medication has side effects that sometimes make me feel bad, and I worry about taking it too often because it’s very hard on my kidneys and liver. I don’t want to feel dependent on it. I want to use yoga or some other sexy technique to make it through. I want to *breathe* my way through it like people who are use mindfulness and/or meditation. So I do sometimes take my medication, but I sometimes feel like I’ve failed or cheated by taking it. Intellectually, I know this isn’t true and that I merely need to function and doing whatever I can to function is generally a good thing. However, it never feels quite as clear cut as it should be.

And with that, it’s time for me to go to my Sunday yoga class. I’ll breathe in, hope that I’ll pass my exams, and then try to exhale everything back into the universe.

 

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Scholarly Interventions

I’m so lucky to have such brilliant advisers! I submitted a draft of the literature review section of my prospectus to get some preliminary ideas, and she provided this feedback:

My overall question is whether you want to make the method (visual ethnography) your primary scholarly intervention, or whether it is just one of your interventions. I guess I am thinking ahead to a potential book project, in which case the main topic would likely be Lyme and the method (visual rhetoric and visual ethnography) the tool you use to help us understand Lyme disease better as a rhetorical phenomenon, specifically with relation to the issue of diagnosis and definition of the condition itself. How are diagnoses shaped rhetorically, especially in our current context, where health is increasingly digitized, public, popular–not just narrowly medical or scientific. In other words, diagnoses and definitions of conditions like Lyme are shaped by these various networks, not just by what scientists write in a medical journal. More specifically, images and other kinds of visual rhetoric play a key role, and these circulate through that network in different ways. Thus the question becomes how a visual analysis (using traditional rhetoric but also elements of visual ethnography) can help to elucidate that network.

***

The second question (and one to think about as you go forward) is whether you’d want to confine the ethnography part to auto-ethnography (and maybe also analysis of other “auto-ethnographic” images people post to blogs or forums), or if you want to do a full-scale study with IRB, recruitment, etc. I think both would be possible but the latter would be a bigger undertaking and might also require more time. Something to ask the committee!

I had a very difficult time putting together the partial prospectus draft because I thought that I could only make one major intervention and I wasn’t sure what I wanted that to be. Thankfully, it sounds like I can make multiple interventions! (Though perhaps this is one of those cases where it is better to do one thing well than half-ass three or four things?) I am trying to think about the prospectus and dissertation as a prospectus and dissertation,–i.e. NOT a book–because I think that the stress of of writing a “book” vs. a “dissertation” will become overwhelming. We’ll see how it goes?

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The Winning Email

The other day,  I finally got up the nerve to email the first (and most important) scientist on my list about my project. I combed through the email for what felt like hours (it was probably only 2.5 total–including my drafting from the other day), and I anxiously bounced around my living room awaiting a reply. (To be honest, I figured that no one would reply to my email. After all, most traditional scientists aren’t interested in humanistic research methods or ways of knowing and thinking–at least from what I know). HOWEVER, this scientist emailed me back within four minutes (!!!!), and within an hour, we scheduled a meeting for when I am in Baltimore next week. WHAT?! I mean, I do consider myself to be a professional writer (and a skilled scientific writer and reader at that), but it was still scary to try to articulate my dissertation project ideas in such a scientific way. Here is a copy of the winning email:

 ——

Dear _____,

My name is Sarah Singer, and I am a PhD student at The University of North Carolina at Chapel Hill. I am beginning a dissertation project in which I plan to conduct a case study about the experience of living with Post-Treatment Lyme Disease Syndrome (PTLDS) using visual ethnography. Since there is not yet an FDA-approved clinical treatment for PTLDS, I aim to investigate if a mixed methods, arts-based intervention will improve the quality of life in patients with persistent Lyme symptoms.

I am writing to ask if you would be willing to briefly consult with me about this project. I am especially eager to get your advice about conducting research with the PTLDS patient population as well as how I might frame this project to better support the goals of the broader Lyme Disease research community. I anticipate that my results will contribute to the JHU Lyme Disease Clinical Research Center’s long-term effort to develop interdisciplinary models for understanding all aspects of Lyme Disease.

I will be in the Baltimore area from December 15th-22nd, and if you are available, I would be happy to meet with you at Greenspring Station, the Bayview Campus, or another location. Alternatively, if it would be easier, we could connect over the phone or Skype at your convenience.

Thank you for your consideration. 

Respectfully,

Sarah Singer

——

At this moment, you are probably thinking, “Wow, Sarah–your project seems so ‘together’!” HAHAHA. No. Definitely not. This is probably one of the clearest iterations of the project thus far, but it could be interpreted in so many ways. (I tried to leave things as vague as possible so that…well, frankly, because I’m not really sure what’s going to happen. Which is why I want to consult with some other Lyme experts to see what they think).

In any case, this is a key moment for me: I talked about my project in a way that made someone else want to hear more about it! What’s hard, though, is that this is one of many ways I could talk about my project, I and I will need to get good at talking about it for different audiences. For example, I recently applied to the Rhetoric Society of America Works-in-Progress event, which matches young and up-and-coming scholars with senior scholars in their field to discuss an article, book chapter, etc. that they are writing. This was a useful activity for me because I had to provide a 200 word summary…of a dissertation chapter that I have not yet written. Yesterday afternoon, I got an email saying that I was accepted! YAY! But now I need to get started on my chapter AND figure out how I am going to prioritize the disability studies perspective, which is the focus of this Works-in-Progress group. Now, it’s not that my project doesn’t and shouldn’t have a disability studies perspective–this is very important to me. However, I will need to shift from thinking about my project as a “case study” about Lyme Disease and visual ethnography to thinking about my project as a direct link to the current conversations in disability studies.

 Time to get crackin’! (And prep for this meeting next week. And read for my exams in February. AHHHHHH!)

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