Sonya Huber Takes the Keys and Other Questions About Chronic Pain

I know the interviewer is supposed to take a back seat and let the interviewee shine, but I have to be honest for a moment here: I have a personal connection to Sonya Huber’s newest book. Pain Woman Takes Your Keys, and Other Essays from a Nervous System is an exploration of life with chronic pain.I’m living with Fibromyalgia—an autoimmune condition that falls within the chronic pain category—but you wouldn’t know that to look at me. I’m still young, still relatively active, and at least seem passingly healthy. You wouldn’t see me and know the constant aches, tingling, and pressures my body alights with every moment I move through the world. I look just like everyone else, but many of my days are burdened by a weight only I can sense, that no one can see—something that feels impossible to communicate to those who can’t feel it.And that’s exactly what’s so special about Huber’s book. Huber has spent the entirety of her career creating voices for voiceless issues, from the minimum wage worker to those left behind by America’s current healthcare system. With her characteristic humor and descriptions that are both startling and deeply felt, Huber’s work encompasses everything from political activism and spirituality, to her life as a writer and professor. She is, above all, a generous writer, one who gives all of herself in her work.

Devon Bohm: What does the term “narrative generosity” mean to you as a non-fiction writer? 

Sonya Huber: To me, it evokes a writer’s mission to not only express and describe but also to write in a way that connects with the reader and to serve the reader’s needs, as well as the writer’s. It also evokes the idea that we are ideally part of communities of writers and readers who are also mindful of each other as human beings. With regard to memoir, narrative generosity might relate to a writer’s commitment to tell as much of the truth as they can, even if a story is difficult to tell, in order to bring under-explored or taboo subjects into the light of discussion and awareness.I myself have always been drawn to reading for a sense of connection to the world—to other realities, stories, and options. And writing offers an even more intense sense of this connection for me. The non-fiction I write is almost always pursuing an unanswered question in my life, and I go for the questions that seem most difficult because I hope that those are the questions that others are also struggling with and that my writing might be relevant to them in some way.

DB: Would you give us a brief summary of what kind of experience we can expect to find in your newest book, Pain Woman Takes Your Keys and Other Essays from a Nervous System?

SH: Pain Woman is a collection of essays on many elements of the chronic pain experience, including how pain affects finances, work, insurance, race, gender, food, parenting, sex, relationships, writing, friendships, self-esteem, and activism. The forms of the individual essays vary widely, so some of the more traditional essays lean more toward personal experience and some more toward research.

So over time, the concept of pain as a flowing, moving being helped me to feel slightly less trapped in pain.

Then there are non-traditional forms, including a few rants, a Harper’s-style index, a few poem-like things, some very compressed lyric essays, and forms based around individual metaphors. One thing I like to mention is that there are funny parts, I think, and I also tried very hard to explore the weirdness and beauty of chronic pain, because both of those things exist.

DB: How did you find your way in to such a nebulous concept as “pain?” Or, rather, how did you find a way to communicate this concept to others?

SH: I felt very stuck inside pain for a few years after my diagnosis of rheumatoid arthritis and I decided to pay attention to all the details of the experience as a way to understand it. Paying attention to the pain was a real test of my descriptive abilities, because the pain experience is so internal. I had to first rely on the narrative generosity of others who’d come before me, authors who’d written about chronic pain but also about a variety of disabilities.Once I began to understand the new community I found myself a member of, I was greatly encouraged by the frameworks and ideas that other writers and thinkers had laid out, which provided alternate ways to view my own experience. It was through these writers that I began to see what some of my options were for how to tell the stories of the experience.The great essayist Phillip Lopate advises that we watch “the mind at work,” and I watched my mind and my sensory inner world, leaning heavily on metaphor to describe the pain experience in a way that was non-judgmental. I was very angry about the pain, and very sad, but my meditation training had also taught me that I should pay attention to how things moved and changed about the experience. So over time, the concept of pain as a flowing, moving being helped me to feel slightly less trapped in pain. As the years passed, I had to cast the net wider and wider, as I began to realize just how much pain had changed and affected every area of my life.

DB: The term “chronic pain” encompasses a wealth of conditions, many of which are not well understood by the medical community or the general public. Was this part of your motivation in your new work—to help give understanding to a little-understood and often-dismissed issue?

Each time someone tells me I’ve helped them or that I’ve gotten something right or have shown them how they might express their own story, I feel such intense joy and connection to others.

SH: I definitely wanted to help bring attention to this issue, but in a weird way, I only felt free to write this book because I told myself I was writing for other “pain people.” My goal was to try to write something that other people in pain might appreciate, that it might offer a laugh or comfort or righteous anger.In the past with my writing, I have felt too hemmed in by trying to “translate” my experience for someone who did not have a similar experience, almost as if I were writing for an imaginary hostile reader. I think it’s good to write for a wide variety of readers, but with this particular book, I set myself free of having to meet the expectations of anyone who didn’t understand pain.I believe that in some way I tricked myself in a constructive way; I released myself from the potentially impossible goal of describing pain. And readers without pain have also said that they can relate to the book, so I think it might still do some of that crossing over.

DB: Do you see your work as a writer as an act of giving? Do you feel you’re giving a part of yourself, as you’re sharing something real to you?

SH: Writing feels like a mutual exchange to me. When I am lucky enough to publish something, I offer up what I’ve been able to put together, and the reader grants me the precious few minutes of their day when they could be doing something else and allows my words to settle in their mind. That’s an amazing privilege, to be let into someone’s life like that.And I can only write because of all of the writing of others that I have read over the years. It feels like a vast and never-ending river of words. I do feel like I’m giving part of my life when I write, but I am also receiving such incredible affirmation.With this book, I’ve received beautiful emails from people in pain and people not in pain but with other health conditions. Each time someone tells me I’ve helped them or that I’ve gotten something right or have shown them how they might express their own story, I feel such intense joy and connection to others. It’s why I write, and one of the best feelings I’ve encountered.

DB: Do you feel like the act of the audience reading your work is one of reception or communion? For you, is the audience a necessary part of the act of writing?

SH: With Pain Woman, I had a very specific sense of the audience I was writing to, and this book in particular felt like it was formed right along with the support of my readers. Unlike anything else I’ve written, I felt myself very tentative at first in publishing essays about pain, because the essays felt so odd. Readers’ responses to the first essays were intense and very positive. And the essays themselves were easier to publish than anything else I had tried to write about. So those two clues from the world helped guide me.

We need to talk about our own experiences and needs, and what our lives are like when we don’t have access to adequate treatment.

Over time, it was the interaction with the audience—and that includes readers and also editors—that emboldened me to keep going, to try to describe new angles of this experience. So I feel like this book came together as a result of an audience that helped me actually find what was there to be said.

DB: In this new collection, do you view yourself as a representative for a community of people suffering (often invisibly)? Do you feel that you’re giving others a voice?

SH: I definitely feel like I am part of the community that identifies as disabled and chronically ill and/or living with invisible illness. The essays sort of track my wrestling with identity and learning about the term “disabled,” and then learning there is both a wonderful, amazing community and a whole framework for understanding the world and embracing that term.I don’t know if I am representing any of these communities; I feel like I’m one voice among many being vocal on these issues—and that’s particularly needed in the United States right now. I hope ultimately to be a conduit through which other people can find their own voices. I’m pretty committed to political activism, and I believe that kind of action takes a lot of loud voices all working together.

DB: Any advice for the chronic pain community or the non-fiction writer community?

SH: I think that finding our own voices to describe what we are going through as people with chronic pain is so important right now, especially given all the false information that is being spread about addiction among chronic pain patients within the opioid epidemic. We need to talk about our own experiences and needs, and what our lives are like when we don’t have access to adequate treatment.Writing and reading each other’s work about chronic pain helps us to get beyond a sense of individual shame that we are not “managing” our pain or “doing enough” or “staying positive,” and that we are instead collectively doing a great deal despite often receiving little assistance. We need to support each other in the telling and sharing of our stories so that society at large sees pain for what it is and sees people in pain as human beings with lives worth living.

Sonya Huber is a Professor of English at Fairfield University and in Fairfield University’s MFA Program. She is the author of six books and a blog, and her work has been featured in The New York Times, Creative Nonfiction, Brevity, and Washington Post Magazine, among other publications.Devon Bohm is a freelance writer based in Connecticut. To read more of her work, check out All Hands, Spry, Mason’s Road, and Labrys.