Tag Archives: knowledge creation

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.

 

Advertisements
Tagged , , , , , , , , , , ,

Everything is Arbitrary

I submitted my prospectus to my dissertation co-advisers on Thursday, March 24th at 1:31am. Don’t tell my dad, but he was right: I did feel a sense of relief after submitting it…even though it’s only 14 pages long and the chapter outlines are practically one paragraph each (instead of a few solid pages each). As I alternated between almost hyperventilating and hiding under my bed, taking pictures of my adorable kitty, snacking, and writing words on the page, I had the biggest breakthrough I’ve had in months. Unfortunately, I don’t think it will help anything.

Everything is about my prospectus (and perhaps this entire process) is…

ARBITRARY

…which is why I’m having so much trouble making decisions about everything.

When I find myself in a high-stakes writing environment, I feel paralyzed until I have a clear outline and projected order of things. Then, I can begin…but the “real” work has already been done: I know what I’m going to write about, where different pieces are going to fit into the puzzle, and probably what the end result is. The trouble with my prospectus, so I’m finding, is that I’ve completed at least 20 different outlines of different versions of the project. I’ve moved pieces around, shifted ideas in and out. Everyone–#TeamRhetoric, #TeamSarah, etc.–was supportive and said that my ideas were great, so I played with different versions of the project but never stressed too much about it. And then came time to finally finish my prospectus. Which version was I going to use? Which one(s) were most promising? Which ones will help me achieve my ultimate goals for the project?

That’s the funny thing about prospectuses. You write them about projects you haven’t done yet, and even in their “final form,” they may serve no purpose other than to check a box that allows you to begin your dissertation project. It’s hard to plan a project you haven’t done yet. It’s hard to anticipate the results of research you haven’t conducted yet.

The moral of the story:

1) pick something; 2) move forward; and 3) revise as you go.

To me, this feels hard and terrible. Perhaps inappropriately so, but that’s been my experience. It’s hard to know how other people solve this problem. One possible way that I’ve surmised is to pick some topoi (cultural commonplaces), search for them in your archive, and switch them up if they’re not meaningful and/or theorize why they aren’t meaningful. In Margret Price’s Mad at School: Rhetorics of Mental Disability and Academic Life (2011), she analyzes topoi such as “presence,” “participation,” “resistance,” and “collegiality” (21-22). Maybe she didn’t start with these exact topoi, but she probably had a few to begin with and discovered the others along the way. She analyzes a range of genres, such as published guidelines from MLA and APA and interviews with “independent” scholars, which probably informed her thinking/topoi selection. Similarly, when I was talking with one of my co-advisers a few weeks ago, she suggested that I mine the pinterest #chronicillness posts (there are thousands of them) using a particular frame like disability. That made that piece of the project seem a hundred times more manageable. (She was probably actually thinking about topoi since she’s written about them before, but that only occurred to me five seconds ago).

Whatever I decide…I have to decide SOMETHING. Maybe kitty can help?

Ori_03-28-16

Oriole “Kitty Queen” the cat sitting on a red fleece bathrobe next to my laptop on top of a black reclining chair. 

 

Tagged , , , ,

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.

Tagged , , , , , , , , ,
%d bloggers like this: