Tag Archives: chronic disease

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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Writing Anxiety: Part 8 Million

It is 9:39pm on a Monday. I need to write but I can’t. There are so many things I need to do. (Most importantly: FINISH MY PROSPECTUS. Which was supposed to happen last Sunday). As writer Katie Rose Guest Pryal put it in her latest article, “I feel stuck in a place, and I can’t break out.” (The irony, of course, is that I am writing this blog post. When I’m usually at this place, I quit while I’m ahead. I make some tea, read a book, get into bed early, maybe take some sleep medicine or a pain reliever, maybe stretch. But I have to finish. I HAVE TO FINISH.

Since my exams, I’ve been waiting for the *big* sigh of relief to come. I’ve been waiting to feel happy and light and as if I can actually relax. I’ve been waiting for my body to get back in sync. After I learned that I passed each of my exams, I had a momentary burst of happiness. (Except after my oral exam, but that’s a story for another time). I hoped they would stay, but they didn’t. I found the exam process physically and emotionally exhausting. I had not had so many (seemingly) unshakable doubts about my ability to succeed since applying to and beginning graduate school. My anxiety was through the roof–and so was my pain. Again, I was sure it would dissipate when things were over. But between the ever-changing temperature and constant humidity and varying amounts of movement I was doing during the day, things remained unpleasant.

Now, I don’t want to be overdramatic. I threw myself a party when my written exams were over and had a great time hanging out with my friends. I ate many delicious celebratory meals, tried to sleep in on a few mornings, and toasted my success with my favorite chai lattes from the Root Cellar. I adopted my troll/cat.  (See the photo below). I finally baked some cookies (triple chocolate chunk via Family Circle Magazine!) that didn’t come out flat and crumble into nothingness. And since I was sure that I was merely overwhelmed with my semester projects and classes and teaching, I comforted myself with the promise that I’d rest and catch up over spring break.

But here’s the kicker. Last week was spring break, and like so many of my colleagues, I DIDN’T FINISH ANYTHING. (Especially my prospectus). Nor did I rest, which is the worst part. Admittedly, my plans were partially derailed due to reasons outside of my control: my partner had a death in the family, so we had to travel 8 hours north for the funeral and drastically rearrange our schedules. We slept in three different beds in four nights, sat in hours of NJ-PA and MD-VA traffic, ate heavy meals, drank too much wine, and dealt with our families. Some of these things were wonderful, of course, but it was all very stressful and we were thrilled to sleep at home in our own best and reunite with our troll/cat last night. BUT STILL.

It’s true: I’m in a rush, and I know that’s adding extra pressure. My dissertation co-directors are will be on leave next semester, so I need to get my prospectus out the door ASAP so that I have a plan of attack and can work independently while they’re gone. (And let’s face it, I can’t have a prospectus defense meeting next month without a prospectus). As I write this blog  post, my left knee feels swollen and achy, my back is sore, my fingers are freezing…my whole body feels out of sync. Academic fields, and rhetoric in particular, have historically worked hard to write out the unstable, emotional, too-easily-persuaded body. I have been trying to ignore my body, but clearly that hasn’t been working…. So if nothing else, maybe writing about my body and acknowledging its role in my writing (or lack thereof) will somehow move me forward?

Onward! But first it’s time for some tea.

Ori_03-21-16

Gray and black-striped cat-like troll sitting on a multicolored couch from the early 1990s and staring affectionately at her “owner” (not pictured).  

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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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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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Doing Visual Research from a Disability Studies Perspective

As usual, I’m caught up in the language. I’m searching for some resources to help me figure out how to use visuals in ways that are accessible to people who use text-readers and other technologies. If I’m going to use visual research methods for a disability studies-oriented project, I need to carefully account for the affordances and limits of using such methods. (Or at least I need to hold myself accountable for thinking through visual accommodations). Since I’m starting/documenting this research on this blog, I thought I’d start looking into visual accessibility by figuring out how to make the blog itself more accessible.

Like the millennial I am, I started with Google. My first search terms included “image descriptions for vision impaired,” “how to make my blog more accessible,” and “how to make my blog more disability friendly.” My inner rhetorician was on high alert; I don’t like calling people “impaired,” but I thought that the phrase might be a commonly used in advocacy communities and would thus generate more results. From these searches, I found a few useful pages/articles (listed in the order I discovered them):

A). The American Foundation for the Blind has a page specifically dedicated to making your blog accessible to blind readers.  They offer seven “tips” that I’ve copied here:

  1. Choose an Accessible Service
  2. Describe Your Images
  3. Avoid the Dreaded “Click Here” or “More…”!
  4. Put Your Blogroll on the Right-Hand Side
  5. Check the Comment Form—Is It Labeled Properly?
  6. Use Flexible Font Sizes
  7. Don’t Force Links to Open in New Windows

B) “The Transcontinental Disability Choir: How to Make Your Blog Accessible in Five Not-Very-Complicated Steps,” a 2009 Bitch Media article by Anna Pearce offers five similar steps that I’ve paraphrased:

  1. Use transcripts
  2. Describe pictures
  3. Make link text relevant (i.e. not click here or more information)
  4. Don’t over-ride browser defaults, especially for text size
  5. Check out how your blog looks in multiple browsers
  6. Pearce mentions that, as a bonus, you can test your website to see how accessible it is – very helpful!

C)  A WordPress community post by Siobhan McKeown titled “25 Ways to Make Your WordPress Site More Accessible” covered all of these items and a few more, which I’ll list below:

  1. Use headings correctly – use only one H1 per page and use heading sizes in order
  2. Use or add skip links to your theme – a link that allows users to move beyond the page navigation
  3. Use underlined links
  4. Use or add ARIA roles
  5. Use lists for easy reading
  6. Don’t rely on color alone and be mindful of color contrast
  7. Ensure tables are marked up correctly

I am going to attend to future blog posts with these ideas in mind, paying particular attention to the points about images. I’m not sure that my visual autoethnographic study of my swollen body parts will transform the field of rhetoric, composition, and literacy studies (or anything else for that matter), but that won’t be an option until more people can experience their glory. (HA).

Speaking of selfies, I came to a realization while I was taking one of my knees this morning: selfies are incredibly performative. Those of you who are Judith Butler fans are probably well-aware of this an anticipated that performativity and selfies would go hand in hand…but it only occurred to me that I was concerned about my performance–and the appearance of my knees–when I realized I was arranging them to portray their optimal bloated-ness. For me, Lyme Disease has been both an invisible illness and an obvious physical disability. Like many chronic pain sufferers, my pain seems more real if it is somehow marked on my body and is constantly shifting from better to worse, from joint to joint, etc. I sometimes want to mark my pain in other obvious ways when it is not clearly evident on my body because it confuses people around me, including my doctors. How could I be in pain if I look so normal? Why should I be seeing a specialist for pain that is only intermittent? In any case, despite my concerns from earlier today, I hope these Lyme selfies can be useful even if they don’t always show visual evidence of my pain. I think they highlight a key rhetorical problem: pain isn’t always clear, experienced in a linear fashion, or unambiguously attributed to one cause…but it can be helpful to claim that to get more aggressive/effective treatment.

 

Lyme Selfie, Day 2: Closeup of my knees resting on top of a pillow.

Lyme Selfie, Day 2: Closeup of my knees resting on top of a pillow.

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