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.