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.