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.
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.