Tag Archives: knees

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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Entering New Territory: Picturing Lyme Disease

So here’s the thing: things are changing. A simple Q&A format clarifies everything and nothing:

Q: What’s the most fun part about research?

A: Things are constantly evolving and you never know where you’re going to end up next!

Q: What’s the most frustrating/scary/difficult part of research?

A: Things are constantly evolving and you never know where you’re going to end up next!

We might say that research is a process that is both recursive and reflexive…which reveals new things as it goes along. When you think you’ve already picked a good topic, found good sites/archives for research, and developed your main claims,this can be rather annoying. I’m currently working my way through this phase; it’s kind of like the denial, bargaining, and other stages of grief. I am frustrated because I know both that my original idea–to study the rhetoric of Lyme Disease–was good, but that my new plan–to study the visual rhetoric of Lyme Disease–is significantly  more compelling.

Thanks to my brilliant #TeamRhetoric Writing Group colleagues, especially Jason and Jen, it has become clear that I should shift my project about the rhetoric of Lyme Disease to focus on visual rhetoric/images specifically. Why this change? I’ve learned a lot about the rhetoric of Lyme Disease in recent history, and as I’ve mentioned in previous posts, I have been particularly unimpressed with the images of Lyme that regularly circulate in popular culture. Photos of ticks and drawings of EM rashes? Maps of where Lyme is located geographically? B-O-R-I-N-G. Not compelling (i.e. seemingly not adding to any particular arguments and appearing to merely take up space at the tops of Washington Post articles). So underwhelming that I started taking photographs of my knees to document my own embodied experiences with Lyme for the fun of it. (See the right side of this blog for a link to some of my selfies). AND YET these underwhelming images are likely a subtle key to the contentious arguments about Lyme Disease–as it exists and as it is imagined.

Evolving questions include:

  • What does Lyme Disease look like?
  • Who circulates images of Lyme Disease?
  • What does the circulation network look like?
    • How do Lyme Disease health-seekers/patients envision their connection to Lyme? How do they document their experiences of Lyme, if at all?
    • How do clinicians who treat 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 of course…how do Lyme Disease visuals function rhetorically? How might images/visuals be effective argumentative tools for presenting new ideas/shifting the focusing/reevaluating the stakes of Lyme Disease?

At the moment, I’m thinking through a few major concerns:

  • Is it possible to do a visual project from/with great attention to a disability studies perspective?
  • I don’t know nearly enough about visual rhetoric.
  • How can I ensure that this will be an explicitly feminist and explicitly intersectional project?

But what I do know is this:

  • Qualitative researchers in the health sciences have reported that visual research methods can reveal new and exciting things about health and medical behaviors and practices, particularly about gender.
  • Scholars in the rhetoric of  health and  medicine haven’t often taken up visuals as a) research methods, or b) objects of analysis. A recent special issue of Communication Design Quarterly, a peer-reviewed journal published by the Special Interest Group for Design of Communication, focused on rhetorics of health and medicine and prompted me to think about designs as visuals….(?)
    • “The essays included here explicitly and implicitly point to different ways that ideas, texts, methods, practices, and technologies work in a variety of healthcare contexts, and more importantly, how that information is designed. The essays also bridge theory to practice.” (Frost and Meloncon 9)
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The Fatigued Researcher

I have been very tired during the past two weeks and it’s making me nervous. I’m trying to push on and be productive, though I haven’t been able to wake up for early morning study sessions like I’d hoped. I have a few ideas swirling right now, but I’ll leave you with some knee selfies from Labor Day for the moment. Jason suggested that I start a Flikr account, which would allow me to save my photos in an organized way and add appropriate metadata, so I signed up this morning. I’m still concerned about making these photos/this project accessible to others, and I’m clearly still working on my blog to make it more useable. (Case in point: I’m not sure that the alt-text shows up when you hover over these photos. Hmmmm…). I’m so lucky to have friends/colleagues who are supportive of all of my projects–especially this one. When I share updates at our writing group session each week, everyone finds something kind to say and makes innovative suggestions even though it is pretty weird for me to be taking selfies of my knees, reflecting on them, and posting them. Although I originally had planned to take pictures of whatever body parts were hurting during a particular day and post those, Jason suggested that I tighten my focus and just take photos of my knees (for instance). This constraint might seem peculiar when people look at the photos individually, but as a collection, they might be really rich with….I guess we’ll see when I get there? In any case, it’s my 24th birthday tomorrow, so I’m going to try to take a knee selfie everyday for the next year and see what happens.

The first image is an upside down view of my knees, which I took while waiting for the bus. My left knee looks particularly misshapen. In the second photo, my legs are spread over my partner's lap and his hands are covering each knee.

I’m lucky to have a partner who both rubs my knees and doesn’t mind looking at hundreds of pictures of them.

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