Tag Archives: everyday practices

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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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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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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Joining the Conversation

What’s exciting about doing interdisciplinary research is that there are many conversations to join, as Graff and Birkenstein would say. (Note: this comes from my favorite writing “textbook,” They Say, I Say – http://books.wwnorton.com/books/webad.aspx?id=4294982902). As I pull my ideas together, it’s difficult to figure out how to arrange them. I talk to my students all the time about how your arrangement should be a writing decision that is inspired by your specific audience. In the case of my dissertation prospectus (which Nick says is merely a snobby word for “proposal”), my audience is my 5-person dissertation committee. However, my project will hopefully appeal to multiple audiences–both scholarly and popular (?)–so I’m trying to think expansively from the beginning.

Here is a brief attempt at physically mapping out who I am talking to and which existing conversations I hope to touch upon:

Rhetoric

**Where does disability studies go?!

  • Rhetoric of Health, Science, Medicine: A rapidly expanding discipline within rhetorical studies. Importantly, many recent rhetoric of HSM studies incorporate multiple, multi-genre, mixed, and/or interdisciplinary research methods to fully account for the HSM portions of the projects. This means that rhetoricians are reading peer-reviewed science and medical journals, visiting gross anatomy labs, participating in online chat rooms in illness communities, and so on. These new topics, virtual and physical spaces, temporalities (ha! academic word!) prompt us to consider new research methods, engage with literatures across disciplines, etc.
  • Visual Rhetoric: Historically, conversations in visual rhetoric have revolved around analyzing images similar to how we analyze texts (as “objects”). I am trying to move this work forward by thinking about how creating and circulating images (the “rhetorical construction,” so to speak) is important to understanding how knowledge is networked and reflexive and other rhetoric words. I don’t know much about this, so I need to go back and engage with this literature. Notably, most studies have been about student writing–ranging from videotaping and photographing student writers to looking at handwriting–and don’t talk much about the making portion or about other kinds of rhetorical studies/topics/objects.
  • Feminist Rhetoric:
    • Historiography: In my opinion, there is/should be a turn towards studying gendered practices instead of recovering individual women for the sake of recovering women in feminist rhetorical studies. Recent feminist historiographies tend to situate HSM issues from the past in the present (re: Robin Jensen’s book, Heather Adams’s dissertation project, etc.). I think that my project responds to a recent concern about how current women (?) rhetors will soon be lost, too, and thus need to be studied as well.
    • Multiple Methods: New topics and time periods call for multiple/new/combined methods!

Visual Ethnography

  • Visual Ethnography: Sarah Pink says that visual ethnography is specifically about learning about people’s ways of knowing vs. learning about people themselves. She argues that visual ethnographic work should be inherently reflexive, making the work more nuanced and preventing some of the previous ethical issues. Visual ethnography can include studying photographs taken by people in their communities, participant-solicited photography, digital imagery, and more. Visual ethnography specifically prioritizes images as main modes of analysis as well as objects of analysis vs. representative of something or having only one meaning. What’s interesting is that what researchers might find to be fruitful/productive/interesting might be different from what participants find to be fruitful/productive/interesting, so I’ll need to account for that in my project.
  • Visual Studies: Long history of incorporating visual work into multiple fields, including anthropology, sociology, and more recently, public health, but visuals were most supplementary and rarely the main means of analysis (vs. the object of analysis)
  • Ethnography: Long history of doing in situ work to learn about people, but in the 1980s and the 1990s, feminists and others argued against the previously lauded “objective” approaches to these studies, which sometimes included observing and writing about people without their knowledge. Recent work aims to limit these kinds of encounters…or at least be honest and reflexive about them.

Health Humanities/Arts-Based Qualitative Research*

  • Health Humanities: Area of study that has been developing since the 1980s. Contention as to whether or not it originated in the medical sphere or in the humanities. Until this point, most studies have prioritized the doctor-patient relationship and have specifically aimed to improve clinical practice. Recently, some scholars have been pushing the “health humanities” name and claiming that it implies an expanded research agenda (i.e. beyond the traditional doctor’s office related hospital spaces), but very few groups have published on it yet. There are some current publications that might fall under health humanities, but they do not necessarily identify as “medical” or “health” humanities even though they incorporate those perspectives.
  • Arts-Based Research: Nurses, occupational therapists, physical therapists, social workers, and public health experts, among others, increasingly turn to mixed and/or humanistic research methods to account for experiences of illness, biomedical encounters, and disability. Recent examples include asking female chemotherapy patients to document their experiences with illness using cameras, using photovoice, art therapy, narrative writing (Pennebaker et al. and more), etc. From what I’ve read, these methods supplement or respond to other methods, but major projects aren’t initiated based off of them. That might be changing, as I just read about an NIH-funded project at Vanderbilt that teaches teens with diabetes to create digital narratives about their illness experiences (or something–I’ll have to re-look it up), but at this point, there isn’t much beyond that.
  • Digital Storytelling: This is probably the biggest unknown at this moment. Digital stories are one of many potential “products” to come from visual ethnographies. What’s significant about products is that it can be hard to figure out which products will serve researchers and participants, honor the participants for their time and effort, and not harm anyone, even inadvertently. I think that I can use my rhetorical/teacher/ish skills to help people make visual and other rhetorical choices about how to arrange, display, and circulate their images and stories. Per the failed NIH grant, some might consider that to be “salting the mine” (i.e. prompting my participants to do something that they think I will like vs. doing something “authentic”), but Sarah Pink pretty much says that everything we do can be authentic if we honestly account for it in our own documentation and write-ups. Digital storytelling might also allow me to engage with my participants in a different way–I might create a digital story, too, and include images that they take of me. Or something. I clearly need to read more about this.

Lyme Disease: A Case Study

  • Multi/cross/inter-disciplinary: Lyme has been consistently studied in biomedical circles (including but not limited to  tick-borne disease groups, rheumatologists, infectious disease specialists, ecologists, animal scientists/biologists, neurologists, cardiologists, mental health experts, and more). This study has created a lot of contradictory data about the diagnosis, treatment, and recovery from Lyme. Also, most of these biomedical-oriented studies miss a lot about the human experience of having Lyme Disease, particularly the experience of being misdiagnosed, inappropriately treated, the expense (psychological, economic, and more) of seeking care, etc.
  • Visual: The main “non-subjective” symptom of Lyme is the erythema migrans rash (i.e. the “bull’s-eye), which is only present in about 20% of infected individuals and only present during the early stages of the disease. Compared to CFS, Fibromyalgia, and other chronic, not-completely-understood conditions with ambiguous symptoms, because Lyme has a clear, uncontested visual symptom, it makes it all the more confusing to treat with the visual symptom is not present. Perhaps accordingly, there are four standard-ish Lyme visuals that have nothing to do with ill, suffering, and/or recovering people and thus continue to shift the focus of Lyme from the human experience to the disease ecology (or whatever they’d call it). Images of ticks, Lyme spirochetes, bull’s-eye rashes, and Lyme endemic maps are seemingly unreflexively taken up by the CDC, activist groups, scientists, and more (beginning with the “discovery”/coining of Lyme by Burgdorfer et al. in 1982, as the article included photographs of spirochetes and a map of probable Lyme diagnoses in Connecticut). In turn, allowing Lyme patients to be makers of images will a) perhaps infiltrate the circuit of standard Lyme images, which definitely don’t help anyone with anything (particularly patients seeking care and treatment), and b) allow ill individuals to become authorities in their own health situations, since Lyme patients are often mis/disbelieved for a variety of reasons. Maybe these images will help Lyme patients leverage something–better care? More understanding from confused or skeptical family members? A way to communicate with other suffers and/or the general public?
  • Rhetorical: The contradictory guidelines for diagnosing and treating Lyme Disease are completely rhetorical. Not much has been discovered about Lyme Disease (in terms of scientific studies), but the statistics and “knowledge” about it changes constantly. For instance, the CDC “updated” the number of suspected Lyme cases in the U.S. from 30,000 to 300,000 in May 2015, which is a pretty huge discrepancy. Since no one can even agree on a name for Lyme/its stages (i.e. “Chronic” vs. post-treatment Lyme, etc.), it continues to be a public health concern that can no longer be investigated only via biomedical research methods.
  • Feminist: I’d like to believe that studying historically underrepresented individuals and groups is inherently feminist.
  • Embodied/in situ: I don’t believe that Lyme can only be studied by looking at the discourse. Much like how Latour and Woolgar went to the lab to learn about how research was done, I think that Lyme (and perhaps other health, science, and medical issues and topics) calls for, if nothing else, a multi-method approach. I can learn a lot about Lyme by reading peer-reviewed articles in scientific and medical journals, but I can situate this knowledge in a specific context by studying Lyme activist group websites, visiting support groups, journeying to Lyme, CT to learn about the environment that continues to breed high rates of Lyme, going to Lyme clinics like Hopkins, etc.
  • Reflexive: As a former/current/who knows Lyme patient, I want to account for my research angle and want to make sure that it doesn’t get in the way of my project or answering my research questions.

Now that I’m thinking about it, maybe this digital stuff should go in its own section?

*These are probably separate things, but I’ll parse them out later.

 

 

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Mulling Over Methods: Grant Proposal, Part II

For the SSRC Dissertation Proposal Grant, I need to think about what new method(s) I want to experiment with for my dissertation. This is the really hard part. YIKES. Instead of freaking out about what I might write and not sleeping for a few days, I’m going to try to draft some ideas below…. If nothing else, doing so permits me to wait until tomorrow to grade my students’ unit projects….

And I’m going to limit my time so that I don’t mess around on Facebook while I’m supposed to be “working.” 9:00pm-9:30pm. GO!

What techniques of investigation might you employ to carry out your research, and how do you expect they will enable you to collect, identify, interpret, and analyze the sources of information (interviews, texts, images, surveys, etc.), for your dissertation research? (up to 400 words)

I guess I should break this down into two parts:

a) “Techniques of investigation”:

Right now, I’m thinking about visual ethnography and interviews as techniques of investigation. I guess it would be good if I picked up all those books I reserved from the library about these things. I think that many rhetorics of health and medicine texts are missing visuals for a good reason: they are expensive to print in  monographs. However, scholars from related fields (like communication design) are thinking about the importance of visuals as part of designing useful texts for patients, displaying disease information, etc. I think it would be helpful to look at Lyme visuals. Notably, there are pretty much no notable Lyme visuals circulating on the internet. Most of the pop science articles about it use stock-like photos of ticks and/or the Lyme rash…which, in my opinion, are not very rhetorically effective. I’ve been inspired by looking at Instagram photos of illness selfies (particularly the very gendered ones of women with chronic conditions in bathing suits), but they aren’t that specific to Lyme. Recently, Avril Lavigne and Yolanda Foster (the woman from Real Housewives who has Lyme) have posted pictures of themselves sitting on exam tables and hooked up to electro-node-things, but I don’t think that they’ve been very rhetorically effective either. This presents a few issues.

1. I think that Lyme discourse is missing pictures of ill people–people’s ill bodies–and that these photographs are rhetorically powerful and thus would help effect change.

2. I’m saying that the photos I have seen of people’s bodies haven’t been very rhetorically effective/useful. A paradox?

I’ve been thinking about this other thread–Lyme and the environment–and I’m wondering if this is a place where visuals can illuminate untapped arguments about Lyme. I’ve read some research in environmental studies journals about how Lyme is spread. Apparently, Lyme is not only passed through deer ticks, and is in fact present in many other small animals who come into contact with humans in areas with a lot of building/development. One article, I think it was the NYT, suggested that it’s unclear if your geographic location or socio-economic status is a better determination of whether or not you might get Lyme. The author didn’t back this up with any supporting research, but the correlation is striking. In any case, I think we’re left to wonder about what Lyme LOOKS like as well as what people who have it LOOK like. If that makes any sense. A bullseye rash is not a person. In fact, it’s completely disembodied (since the photos usually only show an ambiguous body part with the bite/rash on it). Maybe what I’m missing is that the recent photos of Avril and Yolanda are seemingly average/unexceptional–what that’s what Lyme patients look like?

b) How will these techniques help me collect/identify/interpret/analyze these sources of information?:

Right now, I’m trying to have a lot of different source of information:

  • Photos/visuals: A visual ethnographic research method would allow me to create an archive that I could study through rhetorical analysis. I’m not sure if this is what they’re asking.
  • Interviews: MAYBE? I’m going to read Allie Cashel’s (sp?) recent book about Chronic Lyme. In it, she interviews many fellow Chronic Lyme sufferers…I can’t say much more because I haven’t read it. Maybe she’s got that part of it under control. It seems like interviews might be helpful, but I’m not sure what for yet. It would be exciting to talk to clinicians/field experts like Amy Koerber does in her book, but I’m not sure that I have enough ethos to get on their radar. There are also first-person testimonies via Kathleen Hanna’s film, The Punk SingerUnder Our Skin, etc…so maybe this wouldn’t be a fruitful direction?
  • Texts, texts, and more texts: I imagine that I will spend most of my time doing rhetorical analysis of texts about Lyme. Specifically, naming/definitions of Lyme from major interest groups,

Summarize as best you can where you feel most confident in the progress you have made thus far in developing your dissertation research project and what issues or questions you must still resolve in order to prepare a dissertation research proposal. Explain how you hope participating in the DPDF Program might help you to resolve these issues. (up to 250 words)

I am confident that I am going to do a rhetorical analysis/use a rhetorical lens to study Lyme Disease. YAY! Most of all, I want to shift my focus on Lyme and ill women to Lyme and gender and how it plays out. In the same vein, I want to study the everyday practices/rhetorics of people with Lyme in order to honor their experiences and perhaps make more capacious claims about the state of chronic illness in the U.S. I want my project to be explicitly feminist. And I know it’s a good project–there’s a lot of under-analyzed stuff out there (both professional discourse, online forums, etc.)–so I’m joining a conversation, so to speak. Questions that I’m still thinking about that maybe this project could help with:

  • How is Lyme Disease overly/covertly gendered? How? I know that Lyme isn’t gendered in ways that we expect because the largest population of people in the U.S. diagnosed with Lyme are young boys (ages 5-11 maybe?), yet we hear the most about chronically ill women who think they have Chronic Lyme or Post-Treatment Lyme Disease Syndrome and have been misdiagnosed repeatedly and area suffering greatly.
    • I think Lyme Disease is also a race and class issue, and I’d like to explore it using an intersectional approach. I’m not sure how I want to do this. I want my work to be explicitly (and deeply) intersectional, but is this a fruitful direction? 
  • How do ill people with Lyme Disease experience their condition as part of their everyday life/practices? We can easily read snippets of people’s experiences in newspaper articles, magazine features, etc. about their experiences with Lyme Disease, but I want to know more about what it means in their everyday lives. What are we not seeing through our currently available means? 

What preliminary research do you propose to conduct this summer with a DPDF fellowship, and how do you anticipate this research can contribute to the development of your dissertation project? If you have already conducted preliminary research for this project, what further do you hope to learn from additional research this summer? (up to 400 words)

Oops. Time’s up! More tomorrow.

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Documenting My Sick Body: Guidelines for a Manifesto/Project

Since I was diagnosed with Lyme Disease in November 2009, I’ve been documenting my illness in a variety of ways. My mom–one of my primary illness support team members–created a timeline that included both illness highlights (when I first began experiencing symptoms, when symptoms changed, etc.), different medication start/stop dates, medical consultations, etc. This document was helpful when I/we would give my dreaded health history to whatever doctor I was seeing next…until I/we realized that being up front about seeing so many doctors freaked other doctors out (#rhetoricalproblems). On the other hand, my family and close friends will also report that I like to send them selfies of my swollen/painful joints…for no particular reason. Maybe to qualify my complaints in some way? When I had a burn accident in February, I took hundreds of photos of the burns so I could document my recovery process in hopes of filing a lawsuit. (Note: few attorneys are dumb enough to want to fight a case against a state government institution).  Yet I also found myself, for whatever reason, taking some more playful shots alongside the medical-gaze ones. For example…

Although I had been in a horrible accident at 11:55am, around 5:00pm my pain drugs had kicked in enough for me to realize that my hair looked great and needed to be documented.

This is me in my bathroom at my house. I am wearing the hospital gown that I wore home from the emergency room…we won’t go into why that was necessary. Although I had been in a horrible accident at 11:55am, around 5:00pm my pain drugs had kicked in enough for me to realize that my hair looked great and needed to be documented. I took this selfie using a mirror reflection. I’m not sure why, though I’m sure that the Fentanyl would help explain it?

Jen pointed out to me at writing group this week that this kind of documentation is different from other kinds of documentation that patients are typically asked to produce. For instance, diabetes patients are likely supposed to track their A1Cs, chronic pain patients are often asked to keep a pain diary, etc. I haven’t heard of anyone documenting their body in this way for medical reasons, though of course that doesn’t mean that it hasn’t happened. What’s notable, I think, is that I’m trying to keep track of what’s happening to my body in its essential banality. I’m keeping track of various unextraordinary moments in time by documenting my fluctuating knees/knee pain–a common issue for people with Lyme Disease, Post-Treatment Lyme Disease Syndrome, and Chronic Lyme Disease (if it’s really at thing).

Here is my first attempt at establishing some principles (Todd Taylor-style) for this visual autoethnography project:

  1. My decision to document my body in a way that works for me gives me more agency as a chronically ill person and thus helps me move from “patient” to “health seeker.”
  2. These photographs honor the dull, uninteresting everyday pains and practices of chronically ill people. Specifically mine. I don’t speak for any or all of these people and need to be careful not to do that. Yet I do speak as a chronically ill person, which is important to what I think might be at stake for this project and chronically ill people in the United States.
  3. I want these photos to be able be read by screen readers and other accessibility technologies. Since this is a disability studies-oriented project, I want everyone from the academic (and social?) communit(ies) to be able to participate by watching*/reading* if they want.
  4. These photos–the technologies I’m using to take them and store them, the locations in which I take them, etc.–are part of my available means of persuasion. (Thanks, Aristotle!) I come from a very privileged position and want to be attentive to the idea that not everyone–actually, very few people–have the economic means to access such technologies, the digital literacy to figure out things like Flikr, etc. I aim to be attentive to the affordances and limitations of my chosen technologies and to be reflexive as I make recommendations for other humans/researchers/etc.
  5. I’m hoping to shift toward Andrea Lunsford’s definition of rhetoric: “the art, practice, and study of human communication.” I see this project as enabling a kind of “human communication” that I’m unable to achieve using only written words on paper. However, I’m not yet sure what this project “communicates” to other humans, if anything. We shall see?

Perhaps this sounds insane. (It probably is). But I’m looking for something that will…do more, if that’s even possible? I recently read three excellent (and recently published!) monographs that can be classified as feminist rhetorical studies of health, science, and medicine–exactly the kind of work that I want to do–but I found myself getting antsy when I read them. The rhetorical analyses of scientific and public/non-specialist communication about health issues was FANTASTIC, but I wanted to see the breastfeeding recommendation report documents marked up so that I could SEE the differences between them over the years. I wanted to SEE more posters about WWI sexual health campaigns.  I needed images, graphics, video…something? Maybe it’s the millennial in me that gets easily bored, but I actually don’t think so. Hmm….

*”Watching” and “reading” in both normative/traditional ways as well as in other modes accessible to individuals with a variety of disabilities and illnesses.

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