The Wolf Within
by Carli Cutchin
When I was four years old, I came up with a plan: I was going to make my mother well. “Mom, I’m making you an energy machine,” I announced from the kitchen table. My mother was at the counter preparing lunch, her dark hair pulled back in a long, loose ponytail, her legs pale underneath cut-off shorts. The machine was fueled with orange juice: we used to keep those cylindrical containers of Minute Maid concentrate in the freezer. Someone once told me that orange juice gives you energy. When the machine was ready, my mother sat down at the table and drank the juice. “I know this will make me feel better,” she said, her amber eyes twinkling. A part of me believed her. A part of me knew she was playing along. Sure enough, come afternoon, my mother curled up, like always, on the brown plaid couch. While she napped, I played house with three dolls named Amy: Old Amy, New Amy, Big Amy.
All through my childhood, my mother’s lupus was present in one way or another. It gave structure to our quiet days: as my father left for his machinist job at a factory, my mother cooked breakfast and cleaned the kitchen. If she was well enough, she quilted or sewed while I played. With afternoons came her nap; she’d wake up around the time my father returned. The sound of the Plymouth station wagon scraping into the carport was our cue. My mother was too tired to cook in the evenings, so when Dad got home we’d grab our things, pile into the Plymouth, and drive to Denny’s. There weren’t many restaurants in Woodland, California, but there were several Denny’s franchises, so we rotated — Mondays at Denny’s on Main Street, Tuesdays at Denny’s on West Street, Wednesdays at Denny’s on East Street. As the years went by, we followed this routine — breakfast, lunch, nap, Denny’s — faithfully, although in time my mother moved more slowly on the way out the door, her naps became longer, and quilting projects languished half-finished in the sewing room.
After I graduated high school, my mother’s health took a turn for the worse; emphysema from a three-pack-a-day smoking habit had complicated her autoimmune condition. She passed just as I was beginning my senior year in college.
A little over a decade after my mother died, I found myself caught up in my own drama of chronic pain. At 34, I was diagnosed with pudendal neuralgia, chronic pain of the pelvic nerve. Everything became about routine. My cocoon-like bedroom; the white noise machine and earplugs that blocked out the sudden sounds — cars honking, doors banging, beams settling — that set me on edge; long days of bedrest. These were my weapons in the battle against the unpredictable ravages of a nerve disorder. Some days I left my bedroom only to shower or eat. Suddenly, I had become my mother.
In the beginning, the pain was a small thing, barely worthy of notice. I’d had pain with sex before, so when my boyfriend and I made love under a paisley bedspread at a Miami Beach Days Inn, and I felt a minor burning in my vagina, I dismissed the sensation. It was nothing — a UTI, probably. I visited my OBGYN; she thought the pain was caused by adenomyosis, a condition akin to endometriosis. Three months later, over morning coffee in my bedroom, I felt the pain again. I had never experienced hurt devoid of a clear trigger: stove, chopping knife, car door, dental pliers, asphalt, sex. The pain, knifelike, electrical, persisted the rest of the day. And the next, and the next.
I began weekly sessions with a pelvic floor physical therapist. Rebecca evaluated me more thoroughly than my OBGYN. Her diagnosis of pudendal neuralgia turned out to be correct. But while her treatments eased the pain for a day, perhaps two, by the end of the week I was back where I started. I was in my second year of a doctoral program in comparative literature at Berkeley. The coursework was intense. Between bouts of Latin and Henry James, I retreated to the shower, letting the near-scalding water pour down my sacrum and backside, releasing muscles, relieving the pain. It didn’t occur to me to withdraw from classes. School kept my mind occupied; when the work was most engaging, I could almost forget the pain.
My mother’s fatigue did not particularly bother me; I did not mind, for instance, that she couldn’t engage in energetic play. For that I had my father, who on weekends took me to community pools, playgrounds, and on bike rides along verdant country roads. On trips to visit my aunt in Oceanside, Dad would walk me to the beach, where he’d toss me, giggling and fake-protesting, into the surf. Mom stayed back in her sister’s apartment.
There was an element of my mother’s illness that frightened me, though: the knock-down nature of her battle against it. My mother was determined to conquer her immunological aggressor: she would stop at nothing. I remember spiral-bound notebooks filled with questions for the doctor, a medicine cabinet jammed with pills. She must find a form exercise that didn’t hurt or tire her out. Walking? Swimming? We joined a swim center; my mother, who was gaining weight, donned a suit designed for fuller figures and did laps with the one stroke she knew: dog-paddle. At home, during her few good hours each morning, she hacked away at a to-do list (canning, sewing, cleaning), her face arranged as if for combat. If her body did not cooperate, she could become angry — she might throw a dish towel across the room, knock over dining-room chairs. For both of us, life became about crossed fingers, held breath. We were a religious household. Dear Jesus, please help Mom feel better, I used to pray.
When it became clear that Rebecca’s treatments wouldn’t provide lasting relief, I visited an MD who specialized in pelvic pain. Dr. Lisa practiced out of a homey office on Grand Avenue in Oakland. Bespectacled, with curly graying hair, Dr. Lisa had a kind bedside manner. “When you’re in pain, you’re always multi-tasking,” she explained empathetically. That’s putting it mildly, I thought. Still, I appreciated the attempt to grasp the complicated reality of a chronic-pain patient’s life. Dr. Lisa prescribed muscle relaxants, which didn’t work. Then she prescribed vaginal Valium, which soothed the pain, but left me feeling dopey. A pudendal nerve block gave the longest relief: the slow-release steroid worked for six weeks. When my second ground of blocks wore off and Dr. Lisa told me it was too soon for a third, I combed the internet looking for new solutions. Trigger point injections? Surgery? I just needed to find the right thing. Find the right thing and life would go back to normal.
Then I understood: this is what chronic pain does to you. Like my mother, I was desperate to find a treatment that worked. This was war. If you lose one battle, you go on to the next.
A few weeks before my mother passed, my best friend Frank told me he was in love with me. Frank was a muscular rockabilly type who wore a wallet chain and jeans turned up at the ankle. I looked at him, daring myself to believe my luck: I’d been in love with him for years.
I was a virgin. The first — and only — time Frank and I attempted sex, in a minuscule but charming hotel room in San Francisco’s Nob Hill, I cried out stop. Frank withdrew from my body, but I was shaken. Like falling on a fence, I scribbled in my diary the next day. I wouldn’t work up the courage to try sex again for two years. With Blake, I managed to get through the act; afterwards, I bawled for a long time on his carpeted bedroom floor. I wasn’t really sure why I was crying. The sex itself had been uncomfortable, but nowhere near the worst pain I’d experienced. Compared to the time I got my wisdom teeth out, for example, it was a walk in the park. It was only after Blake rolled off of me that the tears started. A long-haired comedian who loved Kubrick and the Velvet Underground, Blake gazed at me from his bed, clearly unsure of what to say or do. I was not able to help him help me. I didn’t know how to explain that his penis inside me had triggered something, something I didn’t fully understand.
My childhood was a joyous prowl through the friendly compass of our suburban home and backyard, marked by sudden, disorienting breaches of the safe and the familiar. I’d be happily sprawled out on the living room floor, watching TV on our thirteen-inch Sony, when my mother would come bounding in, having seen something racy on the screen. Rather than switching off the set, which would have taken a fraction of a second longer, she’d grab a quilt from the quilt stand and fling it over the television. To my small eyes, her act of censorship was more dramatic and memorable than anything happening on the television, which I scarcely understood.
My mother homeschooled me, in part because she didn’t want me exposed to sex education. Under the influence of radical education philosopher John Holt, my mother permitted me lots of free play time. I romped with the dog, sheered my Barbie dolls’ long blonde hair in the bathtub, and read Laura Ingalls Wilder furiously. Mom gave me lessons in sewing, stenciling, and bread-making, our two-bedroom house transformed into the set of a Little House on the Prairie episode. Afternoons, as she curled up on the couch, I scanned her bookshelf, curious (I see now) to know what she was thinking. I read Holt; I read C.S. Lewis. Most fascinating was a book by homeschooling advocates and fundamentalist Christians Mel and Norma Gabler that went by the alarmist title What Are They Teaching Our Children? It’s from the Gablers that I really got a sense of why I wasn’t in school. The Gablers railed against the evils of humanism, feminism, and evolution, which had thoroughly infiltrated public education in America. The most interesting chapter by far was called “Miseducation in Sex.” According to the Gablers, one of the problems with sex-education programs is that they failed to depict the reality of sex and its aftermath. I remember standing at the bookshelf, my eyes glued to the following passages (I’ve saved a copy of the book): “We’d like to see a few facts like these presented in sex-ed books . . . aborted dead babies are being sold from $25 a batch up to $5,500 a pound.” The fetal connective tissue, the Gablers continue, was used to make the collagen found in twelve leading shampoo brands.
I knew how abortion happened: You had sex. Much of what I knew about sex came, in fact, from the Gablers, specifically from the “excerpts” they lifted from sex-ed textbooks. The following passages evoked vivid images in my mind: “After rubbing my back for a while, he unhooked my bra. Then he began to touch my breasts.” “You are ready for genital sex . . . Feel your nakedness against the sheets of your bed . . . Feel another body alongside yours.”
These descriptions are fairly tame. But those fetuses, appearing a mere page later, seemed to charge the entire field of sexuality with a terrible current of danger. This was precisely the Gablers’ intention. At nine years old, I understood their meaning. Learning about sex leads to sex, which in turn leads to disease and abortion and, ultimately, fetus-filled hair care products. What did not occur to me was that my mother, in leaving this book where I could find it, had inadvertently permitted me an education more unsettling, more pernicious, than that which the Gablers warned against.
Sifting through page after page of electronic information in my sunny Berkeley apartment, I stumbled one day across a pudendal neuralgia website that mentioned the origin of the disease’s name. Pudendum, the name of the nerve that innervates every part of the pelvis — perineum, anus, lower buttocks, clitoris, labia, and vulva, or penis and scrotum in men — means that of which one ought to be ashamed. Pudor, the Latin word for shame,comes from an Indo-European root meaning striking as if with a weapon. I had a pain called shame.
Pudor does not have quite the same meaning as the English shame: in classical Rome, pudor was closely connected with notions of honor, with guarding one’s honor. Yet pudendum crept into the English language in ways that had nothing to do with honor. In the Renaissance, English-language writers began using pudenda to mean genitals, especially female genitals. As poet and critic John Hollander puts it, (male) writers “reached out desperately to cover the nakedness of their bodily terminology with the cloak of Latinity.” Too ashamed to use the English word for genitals, they borrowed from Latin, the language of science, law, and philosophy, to speak of those blush-worthy lady parts. In time, pudendum became the technical, medical term it is today. A term, I’ve found, few people are familiar with. I’ve met chiropractors, occupational therapists, and massage therapists who have never heard the word, who in essence aren’t aware a pelvic nerve exists.
Just as I am not the first in my family to suffer chronic pain, I am not the first to have stumbled into an illness freighted with metaphor. Like pudendum, lupus comes from the Latin; it means wolf. Back in the Middle Ages, physicians thought the scaly red rash associated with the disease resembled a wolf’s bite or scratch. At the time, canis lupus roamed Europe in vast numbers.
What Rogerius, the thirteenth-century doctor who gave the disease its name, didn’t know is that in immunological terms, lupus is an attack, an attack of the self on itself. In the modern era, as scientists began to understand the principles of immunology, lupus came to be seen as a form of immunological self-betrayal. “Once putatively degenerative disorders, or the result of hereditary diseases, [autoimmune diseases like lupus] shifted biomedical shape, turning eventually into pathologies of immunity — what happens when our defensive system goes awry and attacks the body’s own tissues,” Warwick Anderson and Ian R. Mackay write in Intolerant Bodies. Or as poet Sarah Manguso puts it: “All autoimmune diseases invoke the metaphor of suicide. The body destroys itself from the inside.”
When I was a teen, my mother would start the day with a pint of chocolate chip cookie dough ice cream, which she’d wash down with a tequila sunrise. After breakfast she opened one of her many leather Bibles — New Standard, New King James, New International Version. Her lips moved silently as she read her favorite verses: For God so loved the world that He gave His only begotten Son . . . There is therefore now no condemnation to those who are in Christ Jesus, who do not walk according to the flesh, but according to the Spirit. . . .
On her good days, after Bible study my mother shifted to her sewing table, meticulously piecing together her latest quilt in floral browns and greens. On her bad days, she stayed in her rocker, smoking. Back and forth, back and forth she rocked, a long tail of ash glowing at the end of her cigarette.
She was there but she wasn’t.
“You’d be better off without me.”
The words erupted from the silence. I was on the couch, reading a novel about a plain girl who finds romance against all odds.
“Don’t say that, Mom.” I sprang to action like a triage attendant confronted with a puncture wound. Don’t think; control the damage. Your job is to stop the pain from flying everywhere. “Don’t say that. I need you. Dad needs you.”
And I did need her. Above all things, I wanted her to heal.
My neuralgia began in 2011. A year passed. Two years. The pain did not go away. At times, it seemed to possess me completely. The pelvic pain is the worst, I wrote in my diary in 2013. Back, neck, foot pain do not compare. They are a bother, a frustration, a nuisance while pelvic pain is an attack, a deep hatred inflicted (as if) by my body on itself.
Wolf, attack; shame, strike. My mother and I are joined in this, the body’s betrayal of itself. I know she suffered worse than I.
In recent years, the pain has been up and down. Some things help: gentle massage, heat, ice, acupuncture, swimming, somatic psychotherapy, friendship, rest (above all, rest). Many things don’t. I have my good days. Today is not one of them.
Pudendal neuralgia makes it hurt to sit, so I write from bed, books and articles and photographs and diaries strewn across the floor and underneath the bed. I am an ill person trying to make sense of illness. I pick up my recently-purchased copy of Susan Sontag’s Illness as Metaphor. “[I]lness is not a metaphor,” Sontag writes, “and . . . the most truthful way of regarding illness — and the healthiest way of being ill — is one most purified of, most resistant to, metaphoric thinking.” I think of my mother’s disease. Sontag does not mention lupus in Illness as Metaphor, but I sense she would shake her head at the proliferation of metaphors that follow lupus around like, well, a deranged wolf. In literature on the disease, lupus is at once warfare, self-attack, self-protection, wolf, wolf’s bite, and butterfly (the rash that once reminded physicians of a wolf’s bite is now called a butterfly rash). “Even if it is a misnomer, the word schizophrenic rightly describes this fierce battle of identity” over lupus’s ‘trademark’ image, writes immunologist David S. Pisetsky — using one distressing illness, schizophrenia, to figure another, lupus. Most of all, though, it’s images of self-destruction that pervade writing on lupus and on autoimmune disease in general. “The most disturbing yet revealing instance of the body’s betrayal of itself is autoimmune disease,” writes theologian Mark C. Taylor.
In a sense, I am sympathetic to Sontag’s insistence that a body is just a body, an illness just an illness. With my own illness, I’ve been annoyed when well-meaning people psychologize my pain. For example, the slender, elegant Virginian at a wellness workshop who, when I told her sitting was excruciating, said, “Just think about sitting, what meaning that has to you.” How can sitting have a meaning? I’d fumed to myself. It’s frustrating, and possibly deleterious, for patients to be told their illness has some deeper meaning which needs to be figured out before they can heal. And one could say that with lupus this is especially so, given not only its dizzying proliferation of figures but its association with self-destruction. Who wants to be told their disease invokes metaphors of suicide?
But the fact remains that the metaphors seem apt in my mother’s case, as they do in my own case. It’s hard to dismiss the fact that pudendum means shame when pain on this very nerve makes sex nearly impossible. When it means awkward conversations with my lover. “I don’t want to hurt you,” he says. Or, when he is less patient, “How long do you think this pain flare will last?” I never know, and I don’t want to be asked. Pelvic pain has meant lying to professors, casual friends, and waiters about why I can’t sit in a chair. Hesitant to use the word pelvis, I say I have back problems. “Have you tried yoga?” my professor asks. Up to two million men in the United States meet the diagnostic definition for chronic pelvic pain, according to the book Pelvic Pain Explained, which sounds like a lot, but then you read this: one in four women will experience chronic vulva pain at some point in their lives. Lupus is nine times more common in women than in men. The reason for this gap is largely unknown.
Unlike Sontag, I don’t think that the reality of illness gets lost when you bring in metaphor. Being ill, and especially an ill woman, means making one’s way through the muck of misdiagnosis, silence, and unknowing. Here in the muck, metaphors help me find the story; here in the muck, metaphors allow me to hold both sense and mystery in the same space.
Most of all, the metaphors are a bridge, a means of connection to a mother who, in spite of illness, in spite of addiction, loved me with a fierce, tender love.
Photo credit: Alexandre Dinaut