Tag Archives: research

On Being Chronic (and Human)

Although the academic year ended nearly a month ago, it’s still hard for me to believe that summer is here. Unfortunately, this is because I am (still) exhausted. The end of the semester felt like a race against a million (mostly external) deadlines, like submitting my seminar paper, defending my prospectus, grading portfolios, submitting conference proposal and other application materials, etc. I tried to catch my breath after defending my prospectus and then after submitting my seminar paper, but there was more to do and I’d left too little time for myself to complete everything. I spent my two “free” days at home during the least three weeks of May cleaning, since my house was a disaster. (I mean, I needed to find and return some of my library books, which had racked up almost $40 in fines, scrub things down…things I’d been putting off for weeks or months. Ugh). And for some unknown and INCONVENIENT reason, I stopped sleeping at the beginning of May (due to stress?) and decided to move some of my medications around as a result…which of course caused sleeplessness/exhaustion, cold sweats, nightmares, and general malaise. This went on for about three weeks. I also over-scheduled myself, and during this three-week period I bounced between Maryland, New Jersey, Georgia, North Carolina, and South Carolina. The worst part of everything was that I’d planned for the travel to be a kind of “vacation.”

I hate writing about this because I risk sounding whiny and dramatic. (Though I sense this is a tension that challenges other chronically ill people, too). I *did* enjoy a long weekend in Cape May, NJ tooling around with some of my best friends from college. I *did* have fun visiting with my parents and some of my UMD professors when I was in Maryland. I *did* enjoy my first Rhetoric Society of America (RSA) conference in Atlanta; I heard many smart presentations, made great #medrhet connections, and in general I was so glad I made the effort to attend. I *did* have one great beach day at Hilton Head with my grandparents and extended family over Memorial Day Weekend. (Yes, I’m the idiot who left sunny Atlanta/halfway through RSA to fly to Hilton Head Island as it was pelted by a tropical storm).

But it was really hard. In general, I–my body–felt terrible. My hips and knees ached. My appetite was off. My back was sore. My neck was stiff. My skin was oily and itchy and uncomfortable. I took my pain medication and still couldn’t get comfortable. Without sleep, and with sleep interrupted by night sweats and terrifying nightmares, I was a shell of myself. I tried to enjoy what I could of the “break” I’d scheduled for myself, but I felt like I was drowning.

All of this sounds so trite, but I’m not sure how else to explain it. I still kind of feel like I’m drowning.

But I’m taking a chance and writing about it on my research blog because it impacted my work, my thinking, my progress, and most significantly, my process. The worst part–the thing I’m most ashamed of–is that I submitted a very inadequate full draft of an essay that had been accepted for publication in a special issue of a journal. I received the edits at the end of December and was sure that I’d have plenty of time to expand the proposal. I worked on the proposal with one of my research teams, but I am the lead author. As February, March, and April passed, I knew I had the June 1st deadline hanging over my head and was sure that I’d get to it when school ended. I was sure there wasn’t much work to be done; the proposal was 6-ish pages and the final essay could be a maximum of 15 pages plus citations. Our argument was clear, and it was up to me to flesh it out. My wonderful, committed team offered to help at any/all stages of the writing process, but I postponed sharing my draft with them, waiting until I had more time to work on it. I wasn’t ready. The essay still wasn’t really ready when I submitted it–one minute after the 11:59pm deadline. The editors still accepted it, of course, but I’m so embarrassed. The work is sub-par, even sloppy. I didn’t get my thoughts together until the very, very end, even though I’d been thinking about the project on and off for months. I asked one of my wonderful English grad student friends from college to read what I had around 8:00pm the night it was due, so I did get a little feedback (which was extremely helpful and helped me refocus the argument). But I guess what I’m trying to say is that it wasn’t what I wanted.

I have heard that the “my work is never done” problem pervades academia and keeps smart people from submitting their work for review. This might be part of my issue, but I honestly don’t think that I submitted good work. It definitely wasn’t my best work, and I feel like I let my research team down. Of course, this wasn’t the final version of the essay, since the editors will send me back at least one more version before the essay goes to press. However, I know that the next edits are supposed to be finalizing copyedits, not major issues with the writing style or arguments, and I’m ashamed that I submitted work that isn’t really up to par.

I guess I should have asked for help, but I wasn’t sure how. With chronic illness, I never really know when a “flare” or issue with side-effects will come up or go away. It’s not even clear to me how bad the “flare” is until it’s over.

I’ve had chronic illness issues for so long that, for the most part, I’m done being embarrassed by what chronic illness does to my body. (The acne and sweating/freezing bring up a special brand of middle school shame, but I have blundered through the weight gain, bloating, nausea, pain, nightmares, and everything else with as much grace as I can muster). But to have it disrupt my writing and thinking process for a long-ish period of time is/was unbearable. I think I found it even more upsetting because I’d pulled through different illness episodes before without feeling like I’d failed at anything. In college, I did my senior thesis research in bed, wrote rhetorical analyses from my parents’ couch, and punctuated my work with naps, Ben & Jerry’s, and pills, changing my pajamas every few days. And yet I was successful despite all of these things. Of course, I also had every economic, familial, and cultural advantage, which cannot be underestimated. (Like in so many illness narratives, the white, upper-middle class feminine-presenting woman with generous economic and emotional support from her friends and family pulls through). But in any case, it made this particular episode even more depressing than ones I’d experienced previously.

Perhaps this is also because I’m now a writing teacher. I teach the writing process. I preach the writing process. (Well, the idea that there are many processes, some of which work better for different people, and that one goal of first-year composition is to find one or more processes and composing techniques that work for you). Still, I struggled to put words on a page–my low-bar but high-impact goal for moving my thinking and my projects forward. I guess this isn’t surprising since I struggled to figure out what state (mentally and/or geographically) I was waking up in, but my inability to follow a reasonable, long-range-planning writing process made me feel like a failure.

As a writer and researcher, this experience generated a number of questions for me. I am usually pleased when kairotic moments bring up new questions–questions that can help me begin to solve embodied, everyday problems–but instead, these questions are making me nervous. What happens when we fail at a/the writing process? How do chronically ill individuals negotiate collisions of academic deadlines and flare-ups and unexpected complications? How and when do chronically ill academics ask for help, extensions, or forgiveness? How and when do we explain ourselves (or not)? If, how, and/or when do we share information about our health issues in a professional context?

As my incisive partner frequently reminds me, I’m “only human”…whatever that means. 

But for now, it’s time to rest and recover.

 

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How to Write a Seminar Paper: Process Writing in Action!

It’s hard to believe, but this past week, I was in the midst of writing my last seminar paper. (HOORAY!) I have always found “seminar papers” to be an exhausting intellectual exercise that is relatively useless. (Yes, I’m using quotations because I think they’re a weird mutt genre that continues to unnecessarily confused graduate students). There are probably articles that discuss how you would go about writing one, but when I first started writing them, I wasn’t smart enough to do that kind of genre analysis/meta-level research. Instead, I suffered. I felt like I could never do enough research to support my claims and that I was just spewing sad, empty, graduate student spittle. Now that I’ve finished my exams and (successfully!) defended my prospectus, I am finding that my last seminar paper is SO MUCH EASIER TO WRITE than all of my other ones. I sense that this is because I’ve finally figured out the metacognitive “moves” that are required in such papers (and their final version, the humanities academic article): you have to “join the conversation“–have something to hang your argument on–in order to be successful.

Now, I’m not saying that this paper was easy to write. Not in the least. In fact, my final product only ended up being 12 pages plus a bibliography…which wasn’t quite the 20 my professor had in mind. I have been thinking about what to write for weeks and finally, in these last few days of the semester, had time to shove some thoughts on a page. For me, research and writing (and in this case, process writing) are interspersed. I read two things, I write down one idea. I read ten things, I try to put together a short summary of what all of the things mean or what they might mean for my project. I write down two questions, I google scholar search for some answers. And in case you’re wondering what that looks like, I attempted to document the process as it happened in this post!

Prior to Research/Writing Days (i.e. the entire semester): 

I used my exam list as a jumping off point. At first, when coming into the class, I thought I would want to write about scientific illustration in the renaissance and how it has changed/stayed the same today–and its continued rhetorical impact. About one month into the class, I started wondering if this was actually going to be an applicable topic; later on, after reading Vico (who uses an illustration at the beginning of his New Science and claims that it explains the entire book), I would find many good starting places, but something came up organically instead. While reading Sheridan via The Rhetorical Tradition, I noticed that Sheridan (and others–at the time, I couldn’t remember who) mention the “deaf man” when talking about rhetoric. I brought this up in class even though I wasn’t sure anyone else had noticed or would find it interesting. Thankfully, CL, our brilliant professor, had noticed and made an insightful comment that the figure of the “deaf man” was a sort of test about how rhetoric worked at that time–if even a “deaf” man could understand you, you were effective. I highlighted, bolded, and changed the color of my notes to signal that this was something I should remember as we got closer to paper submission.

This made me think about the issue of disability and rhetoricity, which I had also read about during my exams. In turn, I checked out a few books that I attempted to read cover-to-cover so that I could get a sense of the “conversation[s]” in progress to which I might respond. These books included: Jay Dolmage’s Disability Rhetoric, Margaret Price’s Mad at School, and Jordynn Jack’s Autism and Gender. I took notes and recorded a lot of quotes which seemed like they might be relevant.

Research/Writing Day 1: 

After CL’s comment, I decided that I wanted to join the conversation about rhetoric, rhetoricity, and disability and relate it to what was happening with Renaissance rhetoric. I first turned to a somewhat-often-cited article in the subfield by Catherine Prendergast, who uses the example of her friend with schizophrenia to argue that individuals with mental disabilities lack rhetoricity. Cynthia Leweiskci-Wilson, Katie Rose Guest Pryal, and others challenge this idea with their own responses; Leweiscki-Wilson says that rhetors with mental disabilities need to expand the definition of rhetoric and what “counts” as communication to make it possible for them to become rhetorical/gain rhetoricity. Pryal says that these rhetors may use different available means of persuasion. In any case, I found all of these related things by playing around on Google Scholar. I searched for “disability and rhetoricity,” “rhetoric and rhetoricity,” “disability rhetoric,” “faculty psychology,” and more. I knew about the Prendergast piece from my exams, so I used it as a point of departure for the rest of the rhetoricity research.

I also examined Dolmage’s bibliography in Disability Rhetoric, Prendergast’s bibliography in both of her chapters, and played the who-cites-who game to try to see who has written the most recent articles about disability, rhetoric, rhetoricity, and more. One of my other favorite games, the “citation game,” helped me decide which pieces to read first. (By the “citation game,” I mean using the “cited by” numbers that Google Scholar provides to see how many people have referenced a certain piece. I think this is an imperfect technique for a variety of reasons, which perhaps I’ll have time to explain later, but when I’m on a deadline, this technique reassures me that I’ve at least seen the titles of some of the most important works in a subfield.

I then went about pulling quotes–from things that I’m reading (i.e. scanning) via Google Scholar research as well as other things I’ve read before that new pieces prompted me to reread or think about. I also copy/pasted/cited quotes, which I put in a Notes document, that made me think about my dissertation project or that seemed like they might be helpful.

As always, research leads me to a variety of fruitful paths and dead ends. I looked at people’s CVs and personal websites (out of curiosity and to see if I’d missed a major publication that might help me), dissertations (for bibliographies and to see the latest work in the field), information for journals I might submit the eventual article version to, and more. Although sometimes I feel resentful that I’ve spent so much time exploring and not enough time putting smart words on a page, my weird Wikipedia-like knowledge sometimes comes in handy later. For example, I was trying to trace the trajectory of publishing in disability studies, and one of the ways I do this is to read people’s acknowledgements so that I can see who mentored them and who they’re friends with.

All of this made me think about Laurie Gries’s discussion of how things “become rhetorical” in her 2015 monograph. While Gries is talking about the Obama Hope image in particular, I think that there is an interesting piece there about the process of becoming–which I think happens for rhetors with disabilities because, historically, disability has been understood as a deficit and an individual problem; a defect that must be surmounted. I didn’t end up discussing Gries in the paper, but her idea of “becoming rhetorical” stuck with me as I tried to parse out the rhetoric/rhetoricity/disability thing.

Throughout the process, I read 5-10 book reviews to get a sense of if the book was worth tracking down. If the book was available in a “read online” version via UNC libraries, I skimmed it, but sometimes I still read the reviews to figure out which chapter(s) to focus on. I often keyword searched within these texts to see if terms like “renaissance” and “rhetoric” came together in the same spaces or if it was just coincidental. (Note: searches for the term “disability” were often fraught because if a Java program was “disabled” on a page, that got pulled up, too).

Part of my research process was also figuring out what was and was not easily available to me. For example, the Disability & Society journal is not available through UNC. I could look through it later and request articles, but I skipped it for now.

I came out of this with about 1.5 pages of notes, including significant quotes and an outline-ish thing. I also had a short bibliography to help me keep track of my sources, which I copy/pasted from Google Scholar.

From time to time, I also rechecked the assignment: How many pages? Are there any special goals I should keep in mind? Etc.

Research/Writing Day 2:

I copy/pasteed my work into a new document and review what I had done so far. What lines of inquiry seem to be the most fruitful? My notes/outline-ish thing have the making of an introduction, but I noticed that, based on what information I had, I wanted to revise some paragraphs into entire sections.

I played around with some quotes and assembled them into some kind of paragraphs–about 1.5 pages of the introduction. I tried to use language that was clear and unsophisticated–I can always go back and revise it later. For me, I don’t feel good about writing unless I have a strong set-up.

What’s weird, at least this time, is that I wrote in chronological order. I often find myself paralyzed if I don’t have an outline and a clear idea of what I want to say before I begin writing. I should do more free-writing–I know I should–but sometimes it makes me feel like my ideas are even messier than they are. Instead, I prefer consulting with friends and advisers if I’m a) completely confused and directionless and can’t even ask a question, and/or b) have a few possible directions and want feedback about which seems most promising.

 

Research/Writing Days 3-5:

I repeated the processes above and used the Pomodoro Technique to try to produce as much writing as possible without having an anxiety attack or aggravating my joints. As I was writing, I figured out that the *REAL* thing I want to focus on is how disability rhetoric helps us define and redefine rhetoric and rhetoricity in expansive ways, ultimately changing the character of rhetoric. The “deaf man” idea probably still can be worked into this, but I really need to go reread my primary texts again so that I can figure out if this is going to work. I submitted the paper with a sort of break in the middle in which I tried to piece together some of the renaissance rhetoric evidence…it was rough. I was trying to also think about imagination, which is something that becomes important in renaissance rhetoric and renaissance definitions of rhetoric, and how that speaks to disability studies, but I got stuck and tired. I ran out of steam.

In turn, I need to go back to this paper because I’m going to use it for the RSA Works-in-Progress workshop…but I would like to take a nap first. (Though it’s only 8:55am). Hmmm.

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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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Write now? Or wait for later?

As I continue working on the prospectus, I’ve been rustling up more and more ideas for future articles and book chapters. Some of the ideas are pretty good–probably better (and/or more exciting) than some of my planned dissertation chapters. So when do I work on these other things?

Timing is key. If I want to go on the academic job market in fall 2017 and graduate by April 2018, I need to have a peer-reviewed journal article in one of our field’s best journals in press by the time I begin applying for jobs. Since the blind-review, review-and-resubmit process is rather time consuming, I have the best chance of making this happen if I send out two articles for review in August 2016. But the question remains: Do I try to write one of my dissertation chapters and shorten it into an article? Do I try to write up one of these other ideas for publication? Or both?

This conundrum, then, begs the question: How long will I take to write each dissertation chapter, and when do I plan to finish the dissertation?

I am not great at writing during the semester except when it’s forced. (Perhaps this is also because I’ve been in 2 classes of my own each semester on top of working with the HHIVE team, teaching my own class, TAing, working at my on-campus job, etc. Not all at the same time, but I’ve done at least 2-3 of these things at once since I started teaching last year). I know I’ll need to cut down on these other activities–and that’s my plan–but can I expect to be productive while I’m still teaching? And when I really feel the economic pinch from not taking on extra jobs, will I be able to maintain my focus? In general, I try to set myself mid-semester deadlines toe force myself to write. For example, I applied to the RSA Research Network Forum (and got in!) because I wanted to push myself to finish at least one dissertation chapter or article-length version of the chapter before June. Will this stress me out? DEFINITELY. But I’m not sure it would get done otherwise. I worry that it wouldn’t get one otherwise.

I guess it would be a good time to make a timeline for how I might complete this work?

  • April 2016 – complete COMM771 seminar paper, which can hopefully be edited and sent to a peer-reviewed journal this summer
  • May – complete Journal of Medical Humanities article (due June 1st); write article/chapter #1 for RNF at RSA
  • June – write article/dissertation chapter #2
  • July – write separate but related article; finish article/dissertation chapter #2;
  • August – submit chapter #1 or #2 as well as separate article to peer-reviewed journal
  • September
  • October
  • November
  • December – Chapter #3 due
  • January 2017
  • February
  • March
  • April – Chapter #4 due

Note: This will theoretically mean that I’ve completed the dissertation, but 

  • May – draft separate but related article
  • June – draft separate but related article
  • July – Job market materials…!!!!!

My challenge, of course, is that I have trouble writing until I have a clear plan about what I’m going to write about…and to complete the dissertation, I’ll probably have to write my way into it. But at least now I have a skeletal plan?

PS: Last night,  I got my first restful night of sleep in weeks! It’s amazing what low humidity can do for those of us with joint problems!

Ori_03-14-16.jpg

Ori, my gray striped kitty, stretched out and asleep. Her smiling kitty face is pressed up against my outstretched arm, and her little ams are crossed over mine, holding me captive and not allowing me to type quite as quickly. I’m glad that someone in our house gets restful sleep…

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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 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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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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