Thinking through Pain

Two years ago, pain claimed a new place in my life (MSH). I had undergone many surgeries, but acute surgical pain was a guest whose visit I slept through, anesthetized, and the pain of recovery was muted by the sense of a clear trajectory to the day when pain would be gone and forgotten. During six rounds of chemotherapy, however, that unseen visitor became a whole summer's house guest, one whose appearance I dreaded and whose patterns I traced and came to predict. Without a way to delay or stop its arrival, I tried to get along with pain as best I could.

Unlike surgical pain, the side effects of Taxol and Carboplatin (and later, Neulasta and Procrit, the therapies I received to build my "tired" blood counts) circulated up and down the continuum between discomfort and pain, teaching me all of the faces on the Wong-Baker scale. On the Monday after my Friday chemo I was a comma, curved around a pillow and whining with bone pain. As the week proceeded, the bone pain eased but I woke each morning to a sense of lower-body oppression, a heaviness that cast its shadow over the rest of the day and sometimes kept me awake at night. The second week was better. In the third week my bones were easy and I felt light, just in time to start all over again.

By the end of the first treatment I had also acquired burning palms and the neuropathy, or nerve damage, I still have—a sensation of sandy socks and a mix of numbness and sensitivity in my feet, hands, and a funny patch atop one thigh. During the summer of chemo, these discomforts sometimes escalated into pain. Walking from one classroom to another, I had to stop many times to rest and stave off public weeping. Some days my hands were too crabbed to type the writing that was already months late getting to this or that editor.

Hair loss layered on an additional discomfort. Given that I had a promising diagnosis and thus the luxury of some emotional distance, this part was interesting, especially at shower time. My nearsighted eyes scanned the white tiles and floor, watching to see what density of dark mesh accumulated on the surfaces and imagine what kind of handful I would heft out to the wastebasket this time. Seeing myself become strange to my own eyes and the eyes of others, with the loss of eyelashes and eyebrows, was not just scary but also fascinating. I understood more about the politics of staring—I stared, too. My balding scalp, however, felt tender and irritable and needed to be constantly cased in the Smurf caps I learned to make from old T-shirts. Around this time my mouth began to get sore, and only multiple rinses with saltwater staved off that ache.

On top of these minor problems, tuning them up to a higher pitch, were things like fear of how my child and husband would fare without me if I died, worry that I would not make tenure, and shame about how long it took to do just about everything. Jane Kenyon's poem "The Sick Wife," in which a woman too ill to do errands waits in her car as

The cars on either side of her
pulled away so briskly
that it made her sick at heart.

captures the emotional thread that connected all these small physical pains.¹

I could go on about this group of small, bad things enclosed in a mild malaise that was my chemo experience, but the interesting thing in my case was not the particulars but the fact that I had spent years studying Victorian cultural constructions of disability and the representations of pain and suffering on which beliefs about disability (then and now) often hinge. More recently, I had written of Victorian doctors' attitudes toward their patients' pain. But only now was I spending quality...