The Kingdom of the Sick
Pain Woman Takes Your Keys and Other Essays from a Nervous System by Sonya Huber
My best childhood friend, Vanessa, suffers from debilitating chronic pain. She has seen multiple specialists, tried numerous treatments, and been diagnosed with a handful of conditions, all of which perhaps come close to naming her experience, but never fully. When the pain first began, she was thirty-four, a nurse practitioner and an avid yoga student. But as the years have dragged on, she’s had to quit working. She spends her days at home trying to manage the pain with both focus and distraction. When I visit her, we do not go out. She can rarely sit for more than twenty minutes before the pain becomes too much, so a restaurant or coffee shop is not a good idea. And travel is out of the question. Usually, we stand in her kitchen drinking hot tea. Sometimes we take her dog for a walk at a nearby creek. But she must always be gauging how much more her body can take, and if she misreads her pain threshold, she may be out of commission for days.
I woke up with a crick in my neck the morning I began reading Sonya Huber’s essays. On a pain scale of 1-10, I would have put the ache at a 2. I could carry on despite the pain, but it hurt enough that I adapted. I turned from my torso whenever I needed to look right, and when I sat to read, I kneaded the spot with one hand while holding the book in the other. It didn’t concern me much; it was more nuisance than debilitating. But I did imagine how much better the day would be once it went away. And I did entertain the uncomfortable notion that it might stay with me forever.
I have physical conditions and pains that are not short lived; they will be life-long companions. But, at some point, we—Vanessa, me, and others—must confront the limitations of our physical bodies. For many, though, these limitations take up residence too early in life; they register distressingly high on the pain scale. Communicating them to those who love and rely on us can be near impossible. And, in addition to isolating us from others, such confinement can isolate us from ourselves, or, at least, the versions of ourselves we had once known and envisioned. Chronic pain is a lonely companion.
Sonya Huber’s chronic pain took up permanent residence in her body in her late thirties via two auto-immune diseases: a rheumatoid disease and Hashimoto’s thyroiditis. Though ever present, she explains that the level of the pain waxes and wanes. One moment she can dance and play on a beach; the next moment her body won’t let her turn a key to open a door. One day she can play with her young son; the next day she must remain on the couch. One month she can blend in with her able-bodied coworkers; the next month she must process their responses to her walking around campus with a metal cane. One morning she can construct complex sentences that tease us with metaphoric subtlety; the next morning, in great pain, she can only pull sentences out of an altered consciousness, the result she calls a “fugue-state reflection.” But through it all, she insists on not letting any of it pass as lost time. And perhaps we all benefit from her decision to give credence to her fugue-state reflections.
Three years ago, on a morning when her chronic pain was acutely incapacitating, Huber got up anyway. She got up and did what she tries to do every morning—write for an hour or two. Like many writers, Huber wants to make this time habitual. In addition to achieving a word count, Huber uses the time to distract herself from her pain. On this morning, she was having difficulty crafting sentences in her usual “serious” style. She could only write from an altered “pain” consciousness, and so she settled for a quick blog entry in which she transformed her college course syllabus into a catalogue of what she honestly wanted to share with her students. She posted it, went on about her day, discouraged by how her condition was hurting her writing, and then returned to her computer to discover the blog entry, entitled “Shadow Syllabus,” had gone viral. This led her to question her writing voice and how she might have been stifling it.
And so, as these essays attest, she began handing the keyboard over to this “Pain Woman,” and learning from her words, metaphors, reflections, and opinions. She writes, “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. . . . Pain woman takes your car keys and drives away.”
Pain Woman wrote this book. It is through the voice of Pain Woman that Huber tells her stories. She tries on metaphors; she makes pain a character with actions and personality traits. She tends to it, cares for it, listens to it, lets it speak. She empathizes with it, and it empathizes in return, “[Pain Woman] cares more about the vulnerable soft flesh of everyone than my normal busy pre-pain self. . . . She aches in slow motion for everyone’s crumbling life.” Huber lets pain make lists. She brings it into her bedroom. She transcribes its poetry. She records its exchange with Huber’s colleagues, its impact on Huber’s son, its presence on social media, its fascination with selfies. And she gives voice to its existential questions, “What is this? What next? Who am I? What does this mean?”
These very questions are the most difficult for pain sufferers to verbalize. Our bodies sense the answer, but the language to process the experience externally with others is limited, as is the famous question we’ve all been asked at one time or another, “On a scale of 1-10 where would you rate your pain?”
Perhaps my favorite essay in the collection, “Inside the Nautilus,” takes this particular question to task. Huber describes the multiple varieties of pain scales she’s attempted to answer only to learn that her answers rarely resemble her actual experience of pain. The one exception Huber finds is a questionnaire that asks, “What does your pain feel like?” Huber notes that with the inclusion of the word “feel,” the scope of her answers is changed. Simile and metaphor become acceptable options, and suddenly her answers look more like a poem than a piece of data and, thus, are more accurate. In completing this questionnaire, she feels her pain slightly relieved, “as if hope of a common language itself might ease this body’s struggle against itself.”
Fittingly, in her essay “Kidney Stone in My Shoe,” Huber traces pain’s presence back to Michel de Montaigne and the words he penned later in life as he struggled with health issues, among them, kidney stones. “Montaigne’s decaying body was also his writing teacher. As he ages and becomes ill, he becomes vulnerable and specific.” His honesty about his pain and his fear of death, his wrestling with mortality, resonate with Huber’s, and she is challenged to write likewise. She enters his affliction and senses that he could enter hers. And she uses his words as evidence: “If health itself, sweet as it is, returns to me by fits, ‘tis rather to give me cause of regret than possession of it; I have no place left to keep it in.” It’s as if any hesitancy she previously held about documenting her own pain journey is removed once Montaigne arrives from the past and offers her an approving, Allons-y.
Once, when I was six, I woke up with a crick in my neck—the first time. The pain was internal. I could not understand how it happened. It wasn’t of the skinned knee or broken-bone variety. I hadn’t eaten anything odd, and there weren’t any viruses going around. I couldn’t categorize it, and it alarmed me. I had never experienced this kind of pain before; I could not imagine it ever going away.
But my mother assured me it would; the best thing to do, she said, was to carry on with the day. At the time, I was taking swimming lessons with an Italian instructor, and the language barrier was frustrating for both of us. When I told him I couldn’t do the backstroke drills because of the crick in my neck, he replied, “What? You have a cricket in your neck? C’mon. That’s the craziest thing I’ve ever heard. Go do your back strokes.” So I did. That day’s practice was excruciating, and shortly after, I quit the lessons. My swim teacher did not understand my pain. He did not receive my expression of it, nor did he attempt to know what it might feel like. Of course, before the day was over, the crick had gone away, but that was my first realization that I could experience physical pain others wouldn’t be able to see or understand.
For my friend Vanessa, this misunderstanding from others is a daily reality. We often speak of people’s inability to understand her navigating constant pain. There are no quick fixes, no remedies. Many would prefer not to believe her than to wrestle with her reality. No one can see it or understand it; it is uncomfortable for them to consider its constancy, and she does not want to bring it to their attention. “How are you?” is a question she never looks forward to answering, as it must include a hint of the unpleasant reminder that her life is not as she or anyone would wish it to be. Her pain leaves her completely and utterly isolated from the world.
But Vanessa is not alone; chronic pain has many hosts. And while relief or hope remain hard to come by, there is understanding in the voice of Sonya Huber’s Pain Woman. She receives all who enter the kingdom of pain, “The kingdom of the ill is mighty and legion, and it is the borderland all bodies must pass through. . . . When you are aching, think of the vastness of the kingdom of the sick. Think of us here, feeling the most common feeling, that of the body in unfamiliar territory. That of the body feeling its own existence. That of the body uneasy, conscious, mindful, aware.”