Pain's Parallel Kingdom

Pain's Parallel Kingdom

Sonya Huber discusses her memoir
Pain Woman Takes Your Keys

By Richard S. Gilbert

We are primitive in our methods, and the nervous system is a mystery.
—Sony Huber, Pain Woman Takes Your Keys

Pain Woman Takes Your Keys and Other Essays From a Nervous System, Sonya Huber (University of Nebraska Press, 2017). 177 pp. $13.37.

Humans don’t want to think about pain—at least I don’t. But pain is our lot, sooner or later. For Sonya Huber, it came sooner.

After a divorce and well into single motherhood, at thirty-eight, she contracted an autoimmune condition in which the thyroid slowly erodes. Within three months of that, she felt her skeleton “pulsing.” A new bodily self-sabotage—rheumatoid arthritis. As Huber points out, autoimmune diseases are when the body attacks itself, for largely unknown reasons. She endures constant joint pain—the main effect of her particular arthritis—along with whole-body aches and odd effects. Woven through Pain Woman Takes Your Keys is her effort to accept and make sense of her suffering.

She writes:

It took roughly five years of pain days to believe that the pain-free body had died. I need to understand that she is buried in photographs with my face, to understand that I am now living another incarnation of myself. . . .

Chronic pain is not a missing limb or open wound; it is the essence of invisible suffering. In Kevin Brockmeier’s novel The Illumination, characters in pain radiate light through their skin. I wonder what it would be like to live in a society like that, where our collective agony might blind us, or where the skin of the afflicted would shine as though they were ethereal beings. I wish I sparkled. I wish my pain made me beautiful, made me more noble, or was a fashion statement. Instead it is just pain, wordless and desperate for expression.

Because she’s a writer, Huber does express, in a considered and artful way. The linked essays in Pain Woman Takes Your Keys form a memoir with a narrative arc. Her desperation early on, when she realizes her fate, but still knows what it feels like to be pain free, makes her “feral.” She sees specialists and cries. She demands, of herself and doctors, to be healed. She settles for palliative measures. Medical professionals’ power over her—their ratings of her “difficulty,” their cold rejections, for endless insurance-related and humdrum reasons—gradually make Huber wary, furtive, meek. This degradation feels instantly real, and you’re angry on her behalf. Friends and colleagues, not knowing what to say when they notice a flare-up, often blunder. They suggest yoga, acupuncture, massage, all of which soothe but cannot defeat what’s undefeatable.

In opening the book, Huber writes more than three pages of declarative sentences starting with the word “pain,” including:

Pain has something urgent to tell you but forgets over and over again what it was.

Pain tells you to put your laptop in the refrigerator.

Pain wants to be taken to an arts and crafts store.

Pain demands that you make eye contact with it and then sit utterly still.

Pain would like French fries and Netflix.

The book’s witty title essay is about one of her few refuges, writing. At first afraid that the “fogginess and ache” of rheumatoid arthritis would destroy her practice, Huber still goes to the keyboard for an hour or more a day. The focus helps. Sometimes blogging is the best she can do. She explains how she wrote, in “an altered pain state,” her humorous post “Shadow Syllabus,” a hermit crab essay. It went viral. In the book, she explains the new persona, in life and on the page, that made that essay:

Pain Woman gives no shits. Pain Woman has stuff to tell you, and she has one minute to do so before she’s too tired. Pain Woman knows things.

My non-pain voice searches for metaphors to entertain you. She aims to fascinate with far-reaching, pretty, solar-system lava curlicues, hiding behind constructions that might allow you to forget for a second that you are even looking at a woman at all.

Pain Woman takes your car keys and drives away.

Thus humor and offhand brilliance meet testimony and literary art. All crafted from hard experience and a fierce struggle. This is why summarizing fails Pain Woman Takes Your Keys. But why read a book about pain in the first place? I’ve had seasons in pain—back injuries and degenerative disc disease generally—and autoimmune diseases run in my family. Not just my own bad allergies. There’s an older sister’s decades with rheumatoid arthritis. A cousin’s Wegener’s disease, very rare. A cousin with severe asthma. An aunt who died from the side-effects of drugs for rheumatoid arthritis. Maybe other stuff I’ve forgotten. As a hospice volunteer, I’ve seen suffering and different reactions to it.

Knowing someone who’s suffering makes real what we normally deny. I have attended a few writers’ conferences with Huber (and I reviewed her book on Hillary Clinton). Such familiarity surely helped me identify with her. But reading Pain Woman Takes Your Keys is searing because of its emotional honesty and its artful shaping. Readers cannot help but imagine themselves into Huber’s situation. Writers will admire what she has wrested from experience.

Sonya Huber answered some questions by email.

Gilbert: Why did you write this as essays instead of as a straight narrative memoir? Having said that, these essays are so linked they are virtually chapters, and they deepen and they extend each other. There’s a progression in both time and disease/life stage. So do you think of this as a kind of “memoir” in the usual sense, even though the pieces are also discrete? And it’s called “essays” in its title. But it’s a stealth memoir, I’d say. Your structural approach has such intent behind it, and I wonder if you’d talk about that.

Huber: When I started writing about pain, I knew that I didn’t want to write a narrative. Pain itself feels like it disrupts my sense of chronology—it almost lifts me out of time. Because I have told the story of my illness to doctors so many times, that chronology feels sort of numb and less interesting to me, and the timeline feels depressing, too, because there’s no cure or ending in my situation. I wrote these slices of my life with pain to offer a kind of escape and even a sense of play and delight for myself as the topics occurred to me.

Then, much later, I looked at the collection I had in progress and gave myself topics to fill in what I saw were the holes in the manuscript, the big topics I hadn’t yet taken on but that I knew were affected by pain. I like the fact that it might hold up as a stealth memoir! The ordering of the essays was done after the collection was finished, kind of as a mix tape, to break up the long serious prose with shorter bursts of lyric writing. But I never looked at the collection from the perspective of time, and now that I think about it, the first narrative piece (“Lava Lamp of Pain”) was the first one I wrote, and the last (“Ten Thousand Things”) was one of the last. So maybe there’s more chronology going on here than I’m aware of!

Gilbert: How in the world did you write such a beautifully crafted and deep book so fast? Were you writing it after five years with your autoimmune diseases? You seem impressively quick even if you started writing three years in. Could you discuss the nuts and bolts of your process, of making this kind of art from your life?

Huber: Thank you! I wrote the first piece at the end of 2014, so I had already been sick for over four years at that point. Until then, I wasn’t writing much about pain—although I was reading about pain and venting about it in my journal. The funny thing is that I was working on a different book project (a memoir) while I was writing these essays, and that book project felt really difficult. So I would “play hooky” on days when I couldn’t tackle the memoir and write about pain. The pain essays felt like recess, because I did not envision them as a collection. In a way they were a place for me to play with language and a way to make something pleasing or interesting out of a situation that I often frankly fight with a lot.

It doesn’t feel to me like I am a fast writer, but I do put things in documents whenever I have ideas, and I believe those accrue shape over time. So I might have had seven or eight pain essay ideas, and as something would occur to me on one of the topics, I’d write it in one of the documents and it would sit there and simmer. I worked for a number of years as a reporter and freelance journalist, and I think being involved with journalism has so much impact on my writing process. I just put text on the page and then worry later about what form it will take. That helps me get to a very rough draft.

Then—and this is so important—I would bring something that felt “done” to one of my two writing groups, and they were completely central. They helped me see where I was diving off the deep end of metaphor and abstraction. That’s my pitfall, especially with this project. My treasured readers helped rein me in. The last critical part of the piece was post-publication readers. I didn’t know I was writing about an interesting subject until after “Lava Lamp” [about the onset of her disease, her desperation, her screaming meltdown] was published in The Rumpus. I thought I was putting something out there that had to be published as a way to share around the agony a little bit, and then responses from readers helped me see with each publication that I could take a tiny further step out into what seemed like weirdness with the next publication. As I’ve only worked on completely structured books before, I had never had the experience of being emboldened by my readers in a step-by-step fashion, and once people—and editors—responded to something, I got more confidence to try the next thing.

Gilbert: You portray one screaming meltdown. You’re at a low point, hardly able to believe what’s befallen you, and you drive hours to a specialist who can’t or won’t help you. Your raging despair in his parking lot is breathtaking, scary. It’s a departure from your largely quiet, thoughtful suffering. It really drove home your pain, loneliness, fear, and hopelessness at that point. But were you worried about readers not accepting this honesty? That is, in creative-nonfiction terms, of not accepting your persona because of the way writers of nonfiction are judged in a way fiction writers aren’t?

Huber: This is so interesting as a question—and it’s weird, I guess, that I never worried about it, as I always worry about my persona and how readers might view me. But in this case…this was one of the clear signpost events in my life that I never doubted writing about. I was so outside of myself with fear and anger that the event feels very objective, like a mystery or a monument I had to describe. In a way I can see that an alternate ordering of the book would lead up to this crisis, after the reader would get to see me as reflective and calm. But in real life that’s not how it feels. It feels like pain dropped into my life like a bomb. I guess I hoped that the reflection and language itself in the essay up until the crisis would make some of the readers trust me. And those who were going to be judgmental about a breakdown in a parking lot definitely would not want to read further. I never wanted to write a book—or even an essay—in which I might describe pain as less than overwhelming, as that doesn’t do justice to either the pain experience or to the many other people with pain. I guess I offered my reliability as persona as a sacrifice.

Gilbert: I found it interesting that Buddhism’s lessons and tools suffuse this book. The penultimate essay, “Between One and Ten Thousand,” presents your ongoing Buddhist learning and practice. And thus Buddhism seems to resonate through the last essay, “Inside the Nautilus,” a tour de force of inquiry and reflection into official pain scales. How did you decide to do so much implicitly instead of writing straightforwardly, maybe near the start, about your spiritual path? And was it a preexisting condition, as it were, to your ailments?

Huber: Oh thank you so much about that last essay—it’s one that’s close to my heart. Yes, Buddhism was a pre-existing condition. I’ve been practicing since 2004, after my son was born. So I am very lucky that I had a few years of meditation under my belt by the time pain hit, as meditation, among other supports, have all helped me get through days of pain. I think Buddhism sort of permeates rather than announces itself because the spiritual practice itself doesn’t offer a drastic change or an epiphany. It’s just another way to inquire. In many ways I think meditation made these essays possible. Buddhist monks in Tibet and India have a practice of going to charnel grounds, places where bodies were decaying above ground in order to look at the corpses and to study their own revulsion and resistance. Thinking about these things—the practice of watching my own struggle with my reality—gave me the support to describe an experience that for many is a bit repulsive.

Gilbert: Your work underscores how far as a society we are from truly treating those in pain. I am thinking both in terms of pain management and in treating them with respect and compassion. Why do you think this is so, when there’s so much suffering? At the same time, America is said to have an opiate epidemic from some doctors’ laxity or corruption. Has that clouded the issue?

Huber: This is such an urgent and complex question, and it connects to the previous question in terms of our clear revulsion toward pain as a society. We don’t like pain—well, no one does—but in the United States, suffering is still often ascribed to character weakness. Calvinism, the Protestant Work Ethic, capitalism—all these systems tell us that we get what we deserve, and that we can make our lives better through individual effort. Effort is important, but we have a mythology that individual striving can erase all suffering, which is clearly not true. Pain is still, on some level, seen to be either psychosomatic, something having to do with age, or something related to a weak constitution. And pain of women and people of color is assumed to be exaggerated and not that urgent. So we’re often deluded about suffering. We can’t even look at it to examine it.

In terms of the medical system, I think our for-profit insurance-based healthcare has to go. It’s not working; doctors barely have time to spend with their patients. And most doctors don’t learn much about pain or pain management in medical school. Their training prioritizes cure as an achievement, and the absence of cure as a failure. Doctors do want to heal people, so chronic pain often feels like a failure to doctors. I think that connects to the opioid epidemic, and the genuine interest doctors may have in doing something to help within their limited structures. I think the primary cause of the epidemic is a medical system in which many patients received prescriptions because they don’t have insurance that is adequate to treat or investigate underlying conditions that might be causing pain, and doctors don’t have time to inquire into the causes or build a relationship with their patients.

The “opioid epidemic” has resulted in a crackdown on medications that chronic pain patients use to survive, and that’s wrong. The suspicion of chronic pain patients being seen as “med seekers” has been present for years, and it’s good to have some awareness about the dangers of substance abuse, but it’s strange that despite that concern, people with addictions still often go into debt to get treatment. What is unseen is that chronic pain people visit multiple doctors out of a genuine desire to get a diagnosis and get better. As I gradually realized there was no cure and that my former life was not coming back, I had profound desperation. That made me scream in a parking lot. It makes people do desperate things, including turning to substances or anything else that might provide relief. So chronic pain is often one piece of a puzzle to solve in a person’s life, and maybe other pieces are mental health, physical issues, employment that aggravates chronic conditions—but our medical system can’t see us as whole people in order to address these problems.

Originally published on

Leave a Reply