Pain Woman Becomes Poem

You can buy Pain Woman Takes Your Keys at your local bookstore, Barnes & Noble, and Amazon.

By Maria R. Palacios

I believe that books, like people, come to our lives for a reason.  They come to our lives when we need them…when we are ready for them. I have always felt that way about books I fall in love with. I become personal with them. I get naked with their words, and feel their pages wrap themselves around mine and become one somehow because that’s what happens when a book grabs me and becomes muse food, poem, essay or even random heartfelt ramblings like my writings tend to be. That’s why reading Pain Woman Takes Your Keys And Other Essays From A Nervous System, by  Sonya Huber was an intense ride, an intense read. Page after page of beautiful cascading words that described, defined, painted, narrated and otherwise gave pain a face, a name a way to communicate with my own experience of pain and my relationship with it.

Sonya Huber’s essays are more than essays. They flow naturally like water. They breathe on their own and pulsate themselves into poetic spasms of self-love and self-loathing all at once as if love and hate were one—as if learning to speak the word pain with love could make pain less painful. And I suppose in some ways it does. She brings us face to face with the social stigma that is automatically attached to the word pain. She exposes the realities of suddenly having to live in a body that is no longer her friend. Her words are poetically gorgeous as they dress and undress pain sharing the many faces of her life as a woman living in a body so intimate with pain. I dare say Pain Woman Takes Your Keys is gourmet food for the mind. A luxurious feast for those who love well crafted words.

But besides being an amazing read, Pain Woman was also a very personal read—one that touched me deeply and made me want to touch the skin of my own pain and try to become friends with it. Until now, pain has been, for me, almost like an out-of-body experience. Growing up disabled, people automatically assumed I was in pain when I wasn’t. By the time PPS (Post Polio Syndrome) slammed my body with pain and fatigue, I had years of experience dealing with people’s reactions to pain and disability. I had grown a thick skin to stares and stupid questions as well as the way people assume I’m fragile and breakable. I realize now that I spent years trying to prove that I’m not fragile or breakable and somewhere along the way, I had also taught myself to negate pain, pretend it doesn’t exist, believe it is something that will always make me stronger and all the other bullshit we tell ourselves when we desperately want to believe something.

And I desperately wanted to believe that I am always stronger than my pain. I wanted to sustain my definition of strong, my definition of successful. And successful and pain are never a good match. I have never been able to write about my pain with total honesty. I write about pain almost always relating to it through the experience of others like writing about Frida, how our shared experiences with polio and our scars have made me love her and want to become my own version of her pain because at least her pain became art. Reading Sonya’s essays turn my own pain into art. As I caress the spine of her book, I let her beautiful words pour pain over my pages, become a new awareness of myself, a new way of relating to pain…kind of like growing the woman version of balls when it comes to writing.

Her book also gave me a very intimate tour of how life is through the lens of a disabled body that does not look disabled to the world. Even though I am a disabled woman, until pain touched me personally, I think I probably struggled with not being sensitive enough to the realities of pain as an invisible disability.

So I pick up my pen and my muse takes off writing as if she suddenly understood pain with the same intimacy as Pain Woman. She writes the poem below. She calls herself a poet.

Hidden Disability

They thought she wasn’t

disabled

because pain has no color,

no shape,

no way of making itself known

outside the body in which it breathes.

 

Pain needs

its own space, its own face.

It cannot exist outside itself.

And as much as she may try to explain,

describe, define, paint a portrait of her pain,

she was the only one who could feel

the needles, the constant pounding,

the throbbing, the tiny people with hammers

hammering away while she

gave herself away to a job that had become

torture

because pain was her boss and it demanded rest…

rest she could not afford

because rest

does not pay the bills.

 

Rest does not make debt go away.

Rest is the only thing she craves,

and the one thing she can’t have.

So she goes to work every day

with those who don’t understand

her disability

because they cannot see

her pain.

 

I put my pen down and realize that I too have the ability to communicate with pain, to write about pain, to give it a body besides mine. I am suddenly able to translate pain into a language of my own. I let it rip open like a zipper, and I look inside the body bag of my fears, my broken relationship with pain. I realize that pain has been a constant friend for years and one I have pretended and attempted to ignore. Suddenly, my own pain becomes a Maria version of Pain Woman. I realize she’s existed all along. She has been taking my keys and my muse and writing my wheelchair into the night until my Pain Woman becomes a rough draft of my former self, a sketch of what pain feels like when it’s cold. She rides my words and lets the wind caress her face until eventually she finds herself transformed into a poem.

 

Maria R. Palacios is a feminist writer, poet, author, spoken word performer, professional presenter, polio survivor, mother and disability activist whose message of hope and empowerment pulsates and breathes through her work. Palacios’ work has been featured in anthologies, articles, audio interviews and other multimedia publications. Known in the artistic world as  The Goddess on Wheels, her multicultural background and passion for onstage performance have come to life through various events over the years. Her work embraces self-acceptance, empowerment and social justice surrounding women with disabilities, gender and sexuality and a wide spectrum of issues as they relate to diversity. Palacios is the author of several publications and the founder of the National Women With Disabilities Empowerment Forum formerly known as the Women With Disabilities Empowerment Fair which Palacios has been bringing to the Houston community since 2010. She can be found online at www.goddessonwheels.com.

A Q&A with Sonya Huber

By Kelly Davio

Sonya Huber is the author of four books and numerous essays, including “The Shadow Syllabus,” which goes viral every new school year. She teaches at Fairfield University.

Sonya Huber’s essay collection Pain Woman Takes Your Keys and other essays from a nervous system, is new from University of Nebraska Press as part of its American Lives series. In April of 2017, I spoke with Sonya about the her writing process, Pinterest, cupcakes, metaphor, and (of course) pain.

Kelly Davio

One of my favorite things about Pain Woman Takes Your Keys is that you’ve made your experience of chronic pain and rheumatoid arthritis incredibly relatable; it’s easy to see many women’s experiences reflected in these essays. One of the universal issues, to this reader, is what we might call “the yoga question.” You mention how many people have asked you whether you’ve tried yoga as a potential cure-all. What do you think lurks behind those interrogations?

Sonya Huber

I do think it comes from naive good intentions, and the desire for a condition to be fixable. Before I got sick I found the same kinds of questions escaping my lips. I think part of what motivates the suggestion, too, is an attempt to connect. But beneath those good intentions, I think, is discomfort. We are a fix-it-quick culture, and sickness and disability are still seen as signs of weakness. I think it’s deeply troubling for many people to contemplate that they themselves might one day have something major going on with their bodies that they can’t control. The “yoga” suggestion is really a story people tell themselves about how they will be able to fix anything that goes wrong for them, I think. Regardless of yoga’s roots, the role that yoga has come to play in our culture is complex. This is not to bash on yoga–I do yoga myself! Rather, it’s sometimes short-hand for a weirdly neo-Calvinist approach to health, which Heather Kirn Lanier describes beautifully in a recent essay in Vela as “mind-body fundamentalism.”

Kelly Davio

The vague and hard-to-pin-down feeling of guilt that comes along with chronic illness is another theme that many readers will recognize in themselves. In “Cupcakes,” you say that “when I berate myself for my mothering, it usually involves a vision of cupcakes,” when you don’t even like cupcakes (or baking, for that matter). Where does this kind of guilt come from, do you think?

Sonya Huber

Martha Stewart and Pinterest? Kidding–but kind of not! I am a slob. I don’t like to cook. But self-acceptance about these traits is a daily struggle–even though I identify as a feminist. I think it’s all a testament to how much I personally need feminism in my life and in my politics, to counteract sexism that we are all soaking in like Palmolive Dish Detergent (referencing a commercial from the 1970s in which a woman soaks her hand in blue dish soap like she’s at a spa). Also, I think it’s much harder to appreciate and take pictures of what good mothering might mean beyond baked goods. Good conversations, for example–I think I do a lot of that with my son, and yet I don’t appreciate it as much because I’ve been trained to see that as “easy” emotional labor. Oh my god, I am winding up into rant mode; that another skill that’s harder to appreciate because it’s free.

Kelly Davio

This collection is rich with personal language for pain that’s unique among anything that I’ve read—pain is “the thumb of God right on me” and “pain demands that you make eye contact with it and then sit utterly still” are among my favorites. Can you talk about the craft choices you’ve made in handling pain as though it’s a character in your personal story?

Sonya Huber

My goal was to try to describe pain’s effect in an emotional, intellectual, and spiritual sense, because as soon as I started to really pay attention to pain, I saw all kinds of interesting dynamics happening. I guess I made pain into a presence first in order to track my conversation with it, to move it away from a bad thing happening to me and toward a presence. Kids do this all the time, this transference and projection, and I needed to make it a being (or I guess many beings) to also get away from feeling trapped or victimized by it. I also wanted to watch what I did in reaction to pain, which became as interesting and important to me as to describe pain as a character. Pain messes with your head, leads you down rabbit holes that can get pretty bad, so I felt like I needed to see pain as a way to understand the shape I was making for it. Both of those phrases you mentioned came up when I was trying to watch how I was acting in the presence of pain while trying hard to stop freaking out about it. Pain–at least the kind of pain I have–sometimes seems to demand that I not move much, which is connected in my head with so many forms of spiritual practice. That doesn’t necessarily mean pain is “spiritual” but rather that there are interesting connections and resonances.

Kelly Davio

You can buy A Curious Land at your local bookstore, Barnes & Noble, and Amazon.

There are essays in this book, “Prayer to Pain,” for one example, when you write about pain with what feels like genuine compassion; you say that “Pain does not want to inflict itself. Its existence is probably its own greatest agony…Pain is more scared than you are; think of its existence.” How did you get to a place at which you could think of pain as something for which you could show empathy?

Sonya Huber

I think I was first reacting to the “battle” language that people sometimes use to describe illness or disability. I struggled for long time with self-judgment about so many other things in my life (and I still struggle), so I really needed to not fight with myself about a whole other thing. I needed to not have another reason to judge or criticize or resent my body or tell myself I’m not good enough, that I’m damaged and defective, and so on. I mean, this collection of organs and stuff is my home. And really, every single cell that feels pain and every single chemical reaction that creates pain is actually me. So I needed to feel empathy for pain as one part of the ongoing struggle to not be so ruthlessly hard on myself. The sick thing is that once I started to play with seeing pain as a character, it became easier to have empathy for it than it usually is for me to generate self-empathy. I was so relieved, actually, after the book came out and I heard other people describe pain as a kind of companion–and not a demonic one. Pain is something I hang out with all the time, and it’s much easier to bear it when I can say “Hi, pain” rather than “Oh my god I am such a loser, I’m in pain again.” (I do both, by the way).

Kelly Davio

In the title essay of the collection, you talk about Pain Woman as a kind of shadow author-self, or a shadow narrative voice, who despite being an unwelcome presence at your writing desk is still a powerful communicator. How do you celebrate the pain woman side of your writing and the unique gifts that it brings to the page without romanticizing suffering?

Sonya Huber

This is a huge concern for me. The assumption that any kind of extreme is naturally connected with insight and artistic vision is pretty dangerous for all kinds of reasons. Among others, it makes people go for those extremes instead of just writing where they are at. And it has a danger of letting someone think I might be “grateful” for my illness because of all the great writing Pain Woman gets to do. Gratitude is fine, but there’s the danger that suffering is okay as a result because it might make us better or purer (and thus we don’t really need to worry about helping those who suffer). I think the way to push against the romanticization is to also stay in touch with the shitty details. Like, it’s so glamorous that I’m lying here on the couch playing Two Dots instead of walking around at a farmer’s market. Or, I have to drive to Hartford in two hours and I’m suddenly scared that I’m not going to have the energy to drive there. Don’t you want my life?

Kelly Davio

Along similar lines, quite a few activists maintain that being disabled is simply another way of living in the world—not inherently good or bad, just different. You wrestle with that issue in “From Inside the Egg,” where you say that accepting pain is acquiescence to suffering, and that “in every case, it’s not okay.” How do you find a balance between advocating for better treatment and research while trying to destigmatize chronic pain?

Sonya Huber

This is another really hard issue for me–partly because I feel like I am slowly learning about disability and writing, disability rhetorics and communities and activism. Those communities and conversations have been key to my sanity. On the one hand, it’s necessary to push back against the impulse that many people have to “fix” my life, to accept myself and this incurable disease and say, you know what, I can still have a great life with whatever conditions I have, and my life is 100% as worthy and beautiful as the next person’s life. At the same time, I am scared of accepting chronic pain because I feel like, in one sense, “acceptance” can be taken to mean that we can be erased and ignored completely. And pain is a crisis; it’s one piece of our extended healthcare crisis in this country. People frame the “opioid crisis” as one of drug addiction, but I believe it’s also a symptom of our dysfunctional healthcare system. So I want to be a strong advocate for research and treatment. Many people with many disabilities have pain, and pain is a specific symptom that can often signal trouble. Everyone who is having trouble and pain deserves medical attention and care if they want and need it.

Kelly Davio

Speaking of stigma, this book makes no secret of the fact that colleagues have tried to steer you away from writing about pain and disability as though they were semi-scandalous topics that could somehow scuttle your career. What does a writer—especially one who’s a woman—risk by being open about her life?

Sonya Huber

I’ve tried in the book to connect to so many public debates, which I think for a male writer might be read as “universal” and “relevant” and for a female writer will be read as “personal” and “emotional.” Many people who write disability narratives are tagged as being self-involved, which is also a favorite epithet used against female writers of essays and memoir. At a personal level, I hope we stay on my husband’s healthcare plan because–given the current level of healthcare sadism–I’m now unavoidably and publicly linked to my pre-existing conditions. Finally, I think there’s the danger that I might be pigeon-holed as unable to do all the stuff I normally do, either at my job or as a writer in the world, because people now know about a condition I’ve had for a long time.

Kelly Davio

On the flip side, let’s talk about the rewards of being open. Your “Pain-Sex Anti-Manifesto” is one of the most relatable and even laugh-out-loud funny reflections on sex, relationships, and the ironic taboos on sex that spring from a sex-positive culture that I’ve ever read. Yet in the essay itself, you mention what a struggle it is to write so vulnerably. Was the essay worth the burden of its own creation?

Sonya Huber

This essay was worth it purely for the experience of going through the writing of it with my husband, who absolutely isn’t fazed by so many things that freak me out. I would not have written either the original magazine piece or the essay if he weren’t cool with them and if he hadn’t helped me try to find words for what I was struggling with. Those conversions were really good for us. Also, I feel like it’s pretty good practice for both writing and living to try to be as honest as I can be on the page, even if it’s cringe-worthy. I feel happy I wrote it, and now I never have to write it again!

 

Kelly Davio is the poetry editor of Tahoma Literary Review and the author of the poetry collections Burn This House (Red Hen, 2013) and the forthcoming The Book of the Unreal Woman (Salmon). Formerly the Senior Editor of Eyewear Publishing in London, she recently returned to the United States to live and write in the greater New York area.

They’d know I was sick when I died at their feet.

By Estella Ramirez

I could tell this pain was serious. I’m familiar with pain. I’ve had chronic digestive problems since I was a child. At college it got worse, and I was diagnosed with IBS (that nebulous diagnosis you get when no other diagnosis is determined). Over time, I learned how to cope, and I knew what to do when I was hurting. This was different. I confided only to my husband, who asked me to see a doctor. I didn’t. One morning, before work, I collapsed on the kitchen floor, bent over with pain. Disturbing amounts of blood had come out of me. Now, let me make this clear, I STILL WENT TO WORK. I waited until the weekend to go to an urgent care clinic. The doctor hospitalized me within minutes. I was anemic. I felt a perverse joy that I was sick enough to take a break. I thrilled at finally having an excuse to prioritize my health as well as my desires. I mean, what if I died? Dear reader, please note I believe any individual is entitled to prioritize their self care—no excuse needed, but some of us are self-punishing in weird ways.

***

You can buy A Curious Land at your local bookstore, Barnes & Noble, and Amazon.

Sonya Huber’s book, Pain Woman Takes Your Keys and Other Essays From a Nervous System, deals with chronic pain through a variety of styles, tones, and angles. Years ago Huber was diagnosed with two autoimmune conditions, including rheumatoid arthritis. Her thoughtful and well-researched personal essays play counterpoint to her experimental, poetic prose. Huber explores the place of metaphor in understanding pain. She weaves in tangential but poignant research on, for example, cloud nomenclature. You might laugh in recognition, at the frustrations of life with illness as a mother, at work, on social media, and in a relationship. She even discusses, against some initial hesitation, her sex-life (“A Pain-Sex Anti-Manifesto”).

Though it’s not meant to be a linear memoir, I read the book in sequence. For me, the book got more interesting as I went along. The title essay, “Pain Woman Takes Your Keys,” comes at the end of Part III of VI. In it, Huber tells how an essay she wrote while in pain went viral, leading her to muse about her writing voice:

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 keys and drives away.

I enjoyed the meta aspect of this, remembering the mixture of voices in Huber’s essays. We are all, she says, “swimming in our multiple voices, and all we have to do is listen to ourselves.”

***

I was in the hospital for five days. On the fifth day I got diagnosed with Crohn’s Disease, which the doctor emphasized was an “incurable, lifelong illness”. Autoimmune. Like Huber’s, my immunological defenses, meant to attack foreign invaders, were overreacting and attacking my own body. Learning about what often happens to people with Crohn’s Disease was worse than the pain itself. The doctor prescribed the typical drugs that would reduce the immune response. He said I now required cancer screenings because of the added risk introduced by both the illness and the medicine itself. He cautioned me to take the prescriptions, as alarming as they sounded, because the alternative was worse—losing my intestines. I came to despise him for scaring me into submission, and for joking to my husband that he should hire someone to help me around the house—but not a blond, wink-wink. He assumed all at once: that I might be the housekeeper of the household, that we might have the financial means to hire someone, that brunettes, including myself, might be less attractive to my husband than blondes…I feel zero pity that no one laughed at his gross joke. My specialist would later more accurately diagnose me with Ulcerative Colitis, by the way—not Crohn’s. And eventually, I would be off meds but still taking herbs and supplements under my primary care doctor’s advice and supervision.

Before all this, though, I waited in the hospital bed for five days, not able to syt, in pain with no answers. I got woken up several times a night for vital signs. I was finally given an ungodly amount of a most disgusting fluid and wheeled away for a colonoscopy. When she first saw me, the nurse steering my bed exclaimed, “Oh! She’s pretty!” Greasy and raccoon-eyed, I saw myself as an irrepressible beauty, glowing even in illness. Not that it was true! Or that it should matter!

When I finally got home, I had lost over 10 lbs from my already low body weight. I could barely move from my spot on the couch. Like Huber, “I couldn’t even do sickness the way I had enjoyed in the past. I couldn’t read.” My husband pre-made lunches for me: containers of plain mashed sweet potatoes and tofu, with love notes adhered to the lids. The gesture heartened me to try eating. When I could read comic books again, things felt less dismal. I graduated to books. Books—my old friend and escape—let me feel myself again.

A year later, I was still on meds and had been stable for months when I relapsed. I sunk into the couch wincing in pain…and guilt. I was supposed to be at choir practice. It took some time, but I managed to force myself to get in the car and go, only to be reprimanded for being late, for missing my solo part. I felt judged for not being dependable, for not being grateful enough for my solo. I blamed myself for not thinking to text ahead that I was sick. It was after this incident that I first posted about my chronic illness on social media. I wanted people to know that flare-ups are unpredictable. When someone is late, we can’t possibly know what it took for them to get there.

People responded to my post with sympathy, but what surprised me most was how many people, all of them women, shared that they also have some kind of chronic pain or illness. In “The Alphabet of Pain,” Huber cites a 2011 study by the Institute of Medicine that estimates “100 million people in the country live in chronic pain.” And you don’t know who in your life is going through it unless they tell you. When I was at my worst, forcing myself to work despite debilitating pain, anemia, and embarrassing urgency for the bathroom, I don’t think a single person suspected a thing. To others, I looked normal. Meanwhile I was sure I was sacrificing my last days on Earth to be at work. They’d know I was sick when I died at their feet. It’s the invisible nature of pain that makes it easy to dismiss. It makes it easy to doubt women who are suffering, even when they’ve sucked it up and waited for the worst possible scenario before seeking help. I learned as a child that my pain could not be proven, that it was easier to accuse me of exaggerating or being a drama queen. Huber notes, “The majority of chronic pain patients are women, and the medical establishment seems to have a hard time hearing or treating them.” She says, “Women’s accounts of pain in particular are often minimized or ignored by physicians.” This has staggering consequences for women who have dramatically better outcomes when diagnosed early, as with Lyme Disease.

This book does not dwell in the negative, but it doesn’t offer answers or solace in the traditional sense, either. There’s no sugar coating. In the introduction Huber expresses hope that her essays do not depress. That might depend on your state of mind as you read. I can’t say how I would have felt about this book when I was newly diagnosed and frightened, but reading it now I felt the camaraderie of a good support group. I found charm in its honesty—and a bit of comfort.

 


Estella Ramirez is a writer and editor in Los Angeles. She has a BA from Johns Hopkins and an MFA from Texas State. You can find her writing at The Toast, Bitch Flicks, Dryland Lit, Angel City Review, and elsewhere.