Chronic pain is a tricky subject to weave a story around. There is often no inciting incident (such as car crash or bullet wound) that is a compelling story in its own right. When you live with chronic pain, the experience seems to drag on, and on, and on, long past the point when you yourself are bored of it. Periodic changes in pain type or intensity are often fleeting and meaningless, and proper endings are elusive.
Given these difficulties, Sonya Huber’s book, Pain Woman Takes Your Keys, and Other Essays from a Nervous System, is a remarkable accomplishment. There were many points in this book where I felt the thrill of hearing someone say the thing you wanted to say, only better.
Huber lives with two autoimmune disorders (Hashimoto’s thyroiditis and rheumatoid arthritis). In her hands, they become both characters and setting. Pain, in Huber’s world, is vivid and kaleidoscopic. It’s the frenemy that crashes on your couch and never seems to leave. She is constantly reevaluating her relationship with it, but at best, she can negotiate an uneasy truce. She is at the mercy of its moods.
At her best, Huber’s writing is visceral and raw. I can hear her frustration at the lost hours and days, and I feel her guilt over lost productivity and family time. I travel with her as she gets lost in inward scrutiny, analyzing each ebb and flow of sensation like a fortune teller examining tea leaves. I wanted to scream at the specialist who cocked an eyebrow, “You’re on a lot of pain pills,” he said, then discharged her without doing much of anything.
Assembling Fragments
This is a book of essays, which are grouped together into six sections. This makes for a tidy table of contents, but the groupings seemed arbitrary. I suspect that if you handed the raw material to ten different editors, they would organize it in ten different ways.
But then, an essay collection doesn’t have to play by the rules of fiction, or even memoir. Each essay is more-or-less self-contained. The focus isn’t on chronology or plot. Although Huber presents snapshots of her life over time, there is no overarching narrative.
The individual chapters were wildly uneven in style and tone, to the point where I often felt like adjacent essays were written by two different people. One possible reason for this is that many essays first appeared in other publications, and the need to tailor pieces to fit an outlet’s audience and editorial standards might well have resulted in separate voices.
This, I suppose, is not an unrealistic depiction of what life is like with chronic pain. It’s an emotional roller coaster that doesn’t necessarily stop anywhere. You might be screaming angry one day, and dizzy with pain the next. Your outlook can change dramatically in a matter of hours. You can’t fairly insist that someone with a chronic illness construct a single point of view.
Each essay was like a photo taken at a single location. I hoped that, with enough photos, I could piece together a view of the landscape. That never quite happened for me. I wasn’t clear where to place some photos in my mental map, and some included intriguing features at the edges that were never pursued.
A Virtuoso of Pain
However, once I was immersed in an essay, I stopped worrying about the bigger picture. Huber is a virtuoso of pain, and I often found myself stopping to dissect a particularly impactful line, in order to figure out the trick.
I never use a highlighter in books, and I don’t leave notes in the margins. But I found myself doing so here. “Good quote,” I scribbled besides lines like:
“What I want is more precision with the blunt language of gratitude. I want more separation from the implicit requirement that we be happy for everything that happens to us— that we not mourn as a part of being grateful. I want release from cartoon gratitude.”
Huber’s health limits her ability to travel (although she is still able to sit when she does so). I wanted to add an enthusiastic AMEN! to this section, which was part of a response to an over-zealous conference organizer who insisted Huber justify her negative RSVP:
“Thank you for reminding me that the world of persona and star-creation is one that excludes bodies with illnesses and that social capital is created with bodily appearances attained only with multiple hours of sitting in cars and trains and planes in vats of bacteria and virus-laden air.”
What Does That Even Mean?
Huber’s essays are rich with metaphors, which zoom around and collide with one another, or else blur together at the edges like brushstrokes in an impressionist painting. Most of the time, I was grateful for these attempts to translate invisible nerve signals into something tangible. “[T]iny, saltwater fishbowls of synovial fluid,” is far more evocative than “joints.”
Sometimes, however, Huber went so wild with metaphor that I had no idea what she was talking about. I found her first essay (which is more like a poem), entitled “What Pain Wants,” utterly baffling. Take this statement: “Pain wants to collect bottle caps to show you the serrated edges, which mean something it cannot explain.” What does that even mean?
This is where I had to stop and examine my own reaction. Was it really the language that was throwing me off, or had Huber simply passed the shores of my ability to empathize? I’ve never had an autoimmune disease. I don’t know what it feels like. Perhaps her metaphors build a beautiful bridge to her own experience, but I have no landing on my side from which to cross.
Infinite Space for Jealousy
I also surprised myself by realizing my empathy could walk hand-in-hand with jealousy.
Huber has a cane, which she uses when her hip is too painful to bear weight. She made a special trip to the pharmacy to buy it. The purchase was an act of capitulation, a tacit acknowledgement of her new state of decrepitude. After she bought it, she cried in her car.
The cane legitimized her pain. Colleagues and neighbors suddenly asked how she was doing in walkways and parking lots. This attention was not always validating. People looked at her with a new wariness. Her son was embarrassed when she brought it to a school fair.
When I read about this incident, my first thought was: She gets a CANE?!!!
However Huber feels about her can on a given day, its presence is a silent reminder that she is not making things up. People pass her more carefully in the halls. She can apply for a temporary handicap tag. A cane, and a gnarled set of knuckles, may not look as atrocious as her rheumatoid arthritis feels, but they are proof that her illness is real.
I have often wished for some external signal to legitimize my own condition. Signifiers of disability, such as dark glasses, a wheelchair, and – yes – a cane, instantly telegraph what a person can’t do, and offers clues about how to accommodate them. I have to tell a story before anyone knows I can’t sit down. This is not the aspect of my sitting disability that annoys me the most, but it annoys me because it seems so easily solvable. I wish for a way to smooth the waters in social situations.
And so, I was jealous of Huber’s cane. And I realized that even in the kingdom of the sick, there are infinite gradations of ability and pain, and there is infinite space for comparisons, jealousy, preening, schadenfreude, and resentment.
Huber notes that after her acquaintances first see her cane, and ask the first awkward questions about her health, “They will tell you the same solutions over and over: have you tried yoga? I had an aunt…” And then I was 100% back with her.
