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Overview
Huber addresses the nature and experience of invisible disability, including the challenges of gender bias in our health care system, the search for effective treatment options, and the difficulty of articulating chronic pain. She makes pain a lens of inquiry and lyricism, finds its humor and complexity, describes its irascible character, and explores its temperature, taste, and even its beauty.
Product Details
| ISBN-13: | 9781496200839 |
|---|---|
| Publisher: | Nebraska |
| Publication date: | 03/01/2017 |
| Series: | American Lives |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 200 |
| File size: | 3 MB |
About the Author
Read an Excerpt
Pain Woman Takes Your Keys, and Other Essays from a Nervous System
By Sonya Huber
UNIVERSITY OF NEBRASKA PRESS
Copyright © 2017 Board of Regents of the University of NebraskaAll rights reserved.
ISBN: 978-1-4962-0083-9
CHAPTER 1
Pain Bows in Greeting
What Pain Wants
Pain wants you to put in earplugs because sounds are grating.
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 runs into walls at forty-five-degree angles and ricochets back into the center of the room.
Pain resents being personified or anthropomorphized.
Pain is a four-dimensional person with fractal intelligence.
Pain wants to be taken to an arts and crafts store.
Pain likes to start big projects and not finish them.
Pain wants to clean one countertop.
Pain asks you to break itself up into neat, square segments like a chocolate bar.
Pain makes a hissing, popping hum like high-tension power lines.
Pain has ambition but is utterly unfocused.
Pain will get its revenge if you ignore it but sometimes forgets what it was angry about.
Pain wants to watch a different channel than you do on TV.
Pain looks at you with the inscrutable eyes and thin beak of an egret.
Pain stubs out the cigarette of your to-do list.
Pain will first try to do some things on that list but will end up with socks on its antlers.
Pain demands that you make eye contact with it and then sit utterly still.
Pain folds the minutes into fascinating origami constructions with its long fingers.
Pain leaves the meter running.
Pain asks you to think about the breath flowing in and out of your lungs.
Pain will ask you to do this 307 times today.
Pain does not mean any harm to you.
Pain is frustrated that it is trapped in a body that is ill-fitting for its unfolded shape.
Pain has been born in the wrong universe.
Pain is wild with grief at the discomfort it causes.
Pain wants to collect bottle caps to show you the serrated edges, which mean something it cannot explain.
Pain keeps pointing to serrated edges and scalloped patterns but cannot explain how these will unlock it.
Pain emphasizes that it is not a god, but then makes the symbol for "neighbor" over and over, and you do not understand what it means.
Pain puts its beaked head in its long-fingered wing hands in frustration and loneliness.
Pain winks at you with its dot-black eyes and tries to make the sign for "I love you."
Pain folds up its wings and legs and spindles quietly and blinks up at you when you say, "I know."
Pain understands that you cannot say "I love you" back but that there is something bigger behind "I love you" that you do not have the words for.
Pain also understands that the background to "I love you" is something like a highway.
Pain licks at its hot spots like an anxious dog.
Pain, when held in place, spirals down into drill bits, so it has to keep moving to prevent these punctures.
Pain asks you to breathe deeply so it can zing about and not get caught on the edges and corners of calendars, books, and electronic rectangles.
Pain's favorite music is the steel drum, and its favorite flavor is fig.
Pain prefers any texture in which tiny seeds are embedded.
Pain shakes its head — no, it says, that is you who likes that texture — and will have nothing to do with spheres.
Pain wants only for you to see where it starts and you stop, but you are a transparent bubble.
Pain and its kind have waited patiently for humans to evolve into the fourth dimension, but they are worried the project is failing.
Pain feels as though Earth's gravity is as strong as Jupiter's.
Pain has something metallic in its bones and is captured by the magnetic core of our hot planet.
Pain envies flesh and its soft strength and ease of movement.
Pain inhabits curved, soft bodies in hopes of fluid movement and then cries when it breaks them.
Pain would like french fries and Netflix.
The Lava Lamp of Pain
Pain moved into my body five years ago. It wasn't the whack of an anvil or the burn of a scraped knee. This pain sat warmly on the surface of my hands up to the elbows like evil, pink evening gloves, with a sort of swimming cap clenched on my head, with blue plastic flowers at the base of the neck, and a nauseating blur in the eyes. At other times the pain was a cold ache at the knuckles, with a frazzle in the stomach and a steady and oblong ache from hip to hip across the pelvis. It was a rigid, curled ache in the toes like the talons of a predatory bird.
How long had it been there? I had noticed, driving home from my teaching job at a public university in a small Georgia town, that my hands hurt when I gripped the steering wheel. I decided to try to grip things more lightly.
But the achiness spread.
Maybe it was stress, I reasoned. Life had exploded in the past few years: a divorce, then single motherhood, and a mysterious infection that turned out to be Hashimoto's Thyroiditis, an autoimmune condition where the thyroid slowly erodes. As the wreckage began to settle, I seemed to be left with a glowing skeleton. I got up in the morning on a fall day, swung my legs out of bed, and thought, Oh, the skeleton did not like that.
Lying in bed at night, I felt my skeleton pulsing. I shifted under the sheet and struggled to fold together my collection of bones. I was a silverware drawer in a mess, a tangled wind chime. I wedged extra pillows between my knees. Advil barely helped at all. It was stress. It was tension. I took a yoga class. I was getting old.
But nobody gets old within three months. I was so angry at every limb, the way each joint refused to do my bidding.
I didn't know then that I had become a lava lamp of curling, invisible storm clouds, filled with a surge of mute motion that might be its own kind of fierce beauty.
I waited a few months and took more Advil. Maybe it was a bad flu or work stress. I still remember the moment, sitting in my car, when I realized things were seriously wrong. The pain broke through whatever container I had built for it. It was bigger. I remember taking out my cell phone and calling the doctor, saying I needed to talk to her about something. It was overcast.
I drove to her office near the Chinese-Mexican buffet. She drew vials of blood and saw that there were weird things on my blood test. She sent me two blocks down the road to a nurse practitioner near the Big Lots, who prodded my joints and explained to me that my body was engaged in a new form of self-sabotage.
I knew self-sabotage, but apparently this wasn't about apologizing too much, or dating wily, unreliable men, or trying to be perfect. This was actual physical erosion. I now had two autoimmune diseases. I was devouring myself.
The joint pain came from rheumatoid disease; my immune system saw my joints as the enemy, for reasons no one really understands.
She left after the physical exam so I could put on my clothes. I thought of my mother's aching, curling, swollen fingers and bouts of pain. I remembered my aunt's crumpled, twisted frame. I could have those bodies in the future, but the deformity threatening me in the future scared me less than the pain itself, this hooded cape that had descended, heavy like wet wool.
I was thirty-eight. I had a five-year-old son who liked to take a running start and catapult himself onto me, all soft limbs and flying hair and giggles, and nestle in and climb and wrestle.
Instead of reaching out to embrace him, I found myself stiffening against contact and wincing. "No, don't hurt Mommy."
I was the bitchy patient, crying after each doctor's appointment, crying with fear when they told me they didn't know what next. I was desperate to be the mommy I'd been before. I wanted to claw my way back to the body I knew.
Instead, I was a slave to the sky. I noticed that an impending storm could knock me flat. The barometric pressure shifts and the Georgia humidity echoed a pressure inside me. I could feel the swelling in each pocket of synovial fluid. I couldn't think or will myself through it.
On one stormy day I dropped off my son at day care and called in sick. I canceled conversations and meetings with my students.
Lying in bed, a day destroyed, I couldn't even do sickness the way I had enjoyed in the past. I couldn't read. The words swam in front of my eyes. I downloaded podcasts and flipped through them listlessly. The only ones that helped were on Buddhism and the illusion of concrete experience.
What you think is bad might not be bad. When you reject something, that rejection causes more pain than the negative experience itself.
I was so whacked out with pain that everyday objects seemed to shine. Every moment I was grateful I was still breathing. I was grateful that I could fall asleep. I was grateful when the rain broke over my rental house, and in the cool air I could get up and move a little easier.
Pain is a cloud, a mist. Pain is like the weather itself. Though the wind and the fronts are invisible, it can flatten a landscape.
The nurse practitioner put me on a drug that once was used for chemo, strong enough to suppress my immune system. I wanted that. I wanted to do battle with myself. But the pain continued.
For the pain, she gave me strong anti-inflammatories and steroids. I swallowed them gratefully at the kitchen counter each morning as I packed a lunch for my son. I felt the pain ebb, and I thought, Take that. I stood up straighter and felt my skeleton quiet.
After a few months the strong, white pills had messed with my liver and my guts. Lumps showed up in my inflamed liver, and red numbers showed up on worrisome blood tests. I'm told the damage will not be permanent, but the disease itself has the potential to attack my organs, my tendons, and my other vital systems.
I met a new friend named Tramadol, an opioid that I always took as prescribed. I began to look forward to the times during the day when I could take my next dose. I still have a clear memory of opening up the pill case in my purse and seeing the little, pointed ovals resting there like smiles. I'd scoop them out with a finger, swallow with a glass of water, and return for a few hours to the body I remembered.
I had moments where my body could be loose. I chased my son, fell back on the couch in laughter, and I loved my quiet skeleton.
The pain pills created an illusion. That pre-sickness body was dead, but I didn't know it.
In place of that quiet physical body, I would have to adapt to a noisy one, a body with the city-buzz of pain always in the background, a chatty, zinging body echoing with the sounds of a thousand-signal radio-buzz jackhammer, snatches-of-an-infomercial, baby-crying, Vincent-Price-ghoulish-laugh violin-cymbals. This body sang with touches of a strange symphony and an alien melody I strained to understand. Audre Lorde describes pain as visiting her "bringing all of its kinfolk," and I understood hosting that various, prickly crowd: "Not that any one of them was overwhelming, but just that all in concert, or even in small repertory groups, they were excruciating."
The noise of pain, the surge of weather-pain, crept in, wearing a heavy cloak — even with the Tramadol.
I had to leave my son's chess tournament because the pain was about to make me throw up in a third-grade classroom among the piles of jackets and the chessboards. I lost days, lying in bed, trying to work, worrying about losing work, losing money, losing my ability to support myself and him.
My nurse practitioner had given me a prescription for strong drugs to slow down and dampen my immune system, but I wanted the whole disease and its pain erased. I wanted the new neutron bombs I'd seen on upbeat drug commercials, where people with rheumatoid disease cavorted in sunlit meadows. I wanted every dangerous pharmaceutical those companies had to offer.
I wanted back each day of my present life. I wanted my hours not to be soaked in this new substance, this jagged strange distracting heat.
I needed more than a nurse practitioner, so I shopped for specialists and made appointments. I drove long distances to see them. Dr. A told me I just had very flexible joints. Dr. B told me I was a young, attractive professor who "looked great," so I had nothing to worry about. He went to get a pamphlet, and I stood up and walked out, quivering with rage.
A year into my pain adventure, I had not yet learned that the word pain is contained within patience. I was livid and panicked with the losses that had accrued.
I started having problems walking. My left hip felt like it was grinding against itself. In desperation I drove to the local pharmacy and stood in front of the rack of canes in the corner near the bedpans and boxes of gauze. I lifted up a cane decorated with gaudy purple and orange passionflowers. I set its rubber tip down on the ground with dread. I didn't want to be a slow, three-legged girl with metal tubing.
I took a step and leaned my weight on the cane. Pressure eased. I could walk with a bit more balance. I leaned on the cane and walked up to the register. I paid for the cane and clomped with it out to the car. I flung it into the passenger seat and cried.
The cane made my pain suddenly real to friends, neighbors, and colleagues. Some of them stood stock-still as I approached. They stared, understanding something communicated by a length of metal tubing that all my words had failed to say.
They asked how I was doing in the grocery store parking lot or on a walkway near the English building, and I watched as their eyes squinted slightly in fear. The reptilian part of their brains hissed and said, Danger. Back away.
Pain is the world's most dangerous criminal, Death's sidekick. When the Grim Reaper shuffles in, what we fear most is not the shroud but the sharp scythe he carries, the "ouch" before the silence. It's hard to confess pain, because other people feel it or imagine it. Then they want to solve it. They will tell you the same solutions over and over: have you tried yoga? I had an aunt ...
They are desperate for the answer to the unanswerable, just like me.
Dr. C was a golden opportunity: a specialist at a fancy university medical center. He would cure me, I knew it.
I got in my car in the Georgia heat and drove along four highways and across one state line. Maybe it was the distance that let me hope I was making a pilgrimage, that each mile brought me closer to relief and to recovering the body and the self I used to be. I imagined that maybe when I got there, I would nail my cane on a wall next to the crutches in a grotto with a Virgin statue weeping real tears.
I went inside a sterile, white room and recited my list of meds to the doctor. He was busy and important and had a resident with him who watched him in adoration. He cocked an eyebrow and said, "You're on a lot of pain pills."
He implied that I was a med-seeker, someone bluffing symptoms to get prescriptions for pain meds for fun or to feed an addiction. I stared at him open-mouthed.
In a panic, I began to play meek, because I had already learned that a doctor's story could block the way to help. Instead of too young or too attractive, I was now needy and addicted. My chest tightened, pulse racing.
My voice shook as I told him I was only following the orders of another doctor. I wanted to tell him this was the only power I had left: to follow instructions from people who were supposed to know how to fix this.
He told me there were vague indicators of the disease but no screaming diagnosis that would lead to more serious treatments. Those serious treatments, it would turn out, were also not a cure, but at the time I wanted magic and remission. To know more, he would need an MRI. I nodded, glad to accumulate evidence. A phone call, however, confirmed that my insurance wouldn't cover the test. So the specialist sent me back to my regular doctor and wished me luck.
I went outside and stood next to my car in the parking lot of the medical center in South Carolina, and I screamed and swore. I screamed with a desperation that made my throat hoarse. I made a scene and screamed again with my wet face to the sky.
I'd been in pain every day for a year, trying to make it as a single mom with a full-time job and no family in the area. I would not be fixed. I could not be healed.
I had been driven beyond the brink of fear into anger, which was easier. I was angry at the smug doctor. But anger and rage brought me back to panic.
I screamed so loud in that parking lot that they heard me inside. Someone in that building called my doctor back in my hometown and reported me as a bad patient, a crazy patient, someone who couldn't play by the rules of decorum because I was making a scene in their parking lot with my grief and my rage over this pain I couldn't handle, over the pain of my lost life.
When I went home, the nurse practitioner began to treat me as though I were insane, as if I might snap with rage at any point, as if I didn't know the difference between a parking lot and a doctor's office, as if I had broken a rule. And I had broken several. I didn't know all the rules of pain yet, the rules of doctors and power and the military decorum and submission, but I would learn.
I had nothing to do but go back to the pain, my constant companion. Unlike the doctors, the pain itself was reliable and might be learned. As I meditated or lay in bed, I watched the way it shifted and rolled along my limbs. I learned that often when the weather report was wrong, I was right.
(Continues...)
Excerpted from Pain Woman Takes Your Keys, and Other Essays from a Nervous System by Sonya Huber. Copyright © 2017 Board of Regents of the University of Nebraska. Excerpted by permission of UNIVERSITY OF NEBRASKA PRESS.
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Table of Contents
Contents
Preface,Acknowledgments,
I. Pain Bows in Greeting,
What Pain Wants,
The Lava Lamp of Pain,
Welcome to the Kingdom of the Sick,
The Alphabet of Pain,
Prayer to Pain,
II. Side Projects and Secret Identities,
My Alternate Selves with Pain in Silver Lamé Bodysuits,
The Cough Drop and the Puzzle of Modernity,
From Inside the Egg,
Cupcakes,
Amoeba Girl,
III. My Machines,
The Status of Pain,
Peering into the Dark of the Self, with Selfie,
Augmentation,
Interstate and Interbeing,
Pain Woman Takes Your Keys,
IV. Bitchiness as Treatment Protocol,
On Gratitude, and Off,
Life Is Good1,2,3,
Dear Noted Feminist Scholar,
V. Intimate Moments with the Three of Us,
A Pain-Sex Anti-Manifesto,
The Joy of Not Cooking,
Kidney Stone in My Shoe,
If Woman Is Five,
A Day in the Grammar of Disease,
VI. Measuring the Sky,
Vital Sign 5,
Alternative Pain Scale,
In the Grip of the Sky,
Between One and Ten Thousand,
Inside the Nautilus,
Sources,