The doctor asks you to bend down, then waddle a few steps as he watches you. You might be ten but could be fourteen, at the pediatrician or in the school nurse’s office, probably a girl but maybe a boy. It might be the last item on a long checklist of routine things: height, weight, blood pressure, pulse, and temperature, check; vision and hearing, check; mumps vaccine, chickenpox history, tetanus shot, check; then, finally, the duck-walk diagnostic test.
Me, I was in the school gym. I’d waited with friends for my turn in the locker room with the doctor who’d volunteered to give physicals for the middle-school athletes. He knew my mother, so we made polite conversation between routine questions. Then, he asked me to bend and take a few steps. I did so, staring at the cracked concrete beneath my bare feet. When I was allowed to straighten, I could see that the doctor’s face had changed completely.
Locked on my torso, his now-serious eyes ticked left-right-left-right, then fixed on the planes and angles of my shoulders and hips. Trusting that I trusted him, the doctor placed one of his hands on my shoulder and his other hand on my hip. After a moment, one of his hands moved to my back and traced the misaligned knobs of my spine. That sensation, a man’s hand running down my spine impersonally, as if I were no more animate than a mannequin or cadaver, would become very familiar to me.
Scoliosis curves your spine into an S, a biological scarlet letter glaringly visible by X-ray but also perceptible to the naked eye. The upper half of my spine had bowed to the right as I hit puberty while the lower half curved left. Scoliosis was a threat I never knew to anticipate. Although my father’s mother developed scoliosis in her sixties, I hadn’t known about it: it wasn’t quite the same thing, as hers was linked to advanced osteoporosis.
I was thirteen and found it hard to get answers about my scoliosis from anyone but my treating physician. Three orthopedists gave three different answers. My independent resources were PubMed and the library. I panicked when I realized how little control I had, how little information was available to me, and how uncertain my future might be.
At first mild, my spine’s curves progressed steadily over two years: from thirty-five degrees, at diagnosis, to forty-five degrees, and then fifty-five degrees, at which point the three-dimensional twisting of my spine began to compress my heart and lungs. Even if the scoliosis had stopped progressing, I would still have had to worry about complications later in life, especially if I chose to become pregnant.
Not even a hip-to-collarbone brace, worn twenty-three hours a day, slowed the twisting of my spine. The near-constant bracing coincided with some of the most awkward months of my early adolescent life. At first I was excited by the prospect of a solution. I clung to that hope through the humiliating process of fitting, which required me to wear a thin cotton body sock while a stranger measured and molded my torso. The product looked medieval: a portable, plastic iron maiden. Instead of spikes, though, the prosthetic was to use hard, round protuberances to torment me.
The concept is like an orthodontic retainer: the device was to corset my torso tightly, pushing my spine straight. Because I was allowed to choose the pattern, there were fish all over my brace; it looked like a lumpy, cylindrical aquarium, with a slit. After I wedged myself into the brace, someone else had to tighten its thick Velcro straps. The initial eagerness I felt dissipated after weeks of wearing the brace almost constantly.
In the Bible Belt, where I grew up, people look to scripture for guidance. I tried, but Leviticus damns deformities: the book warns against allowing the deformed to blight the priesthood, listing among the deformed those who have “a crooked back.” Modern translations made the prohibition even clearer by rendering that with the specificity of “he who has scoliosis,” so I turned to other texts.
My grandmother gave me D’Aulaire’s Book of Greek Myths. It’s a beautiful, outsized, golden book that I spent hours reading. Elbowing aside the glorious, glitzy gods, I found hobble-legged Hephaestus. As much a deity as his siblings, he was reduced by his deformity to aiding and entertaining them. At one feast in the Iliad, in an attempt to defuse a fight between Hera and Zeus, Hephaestus begins serving wine to all gathered; his unsteady hobbling around the table amuses the guests, and like a good fool he performs until all the tensions of the meal have faded. Hephaestus stood for the difficult, often demeaning role for the deformed in society.
The nondivine inhabitants of Ancient Rome and Greece enslaved the deformed. A market sprang up around the rarity of truly exotic, naturally occurring deformities. Plutarch wrote of literal “monster markets.” There Romans could purchase persons who “have no calves, or who are weasel-armed or who have three eyes or who are ostrich-headed.” The most valued of these were the visibly, organically deformed: “prodigious hermaphrodites, dwarfs, hunchbacks.”
The deformed slave could become the court jester, wielding real power. As Beatrice Otto writes, such a position required a combination of a “quick-witted mind” and either “nimble-footed capering” or “some appealing deformity.” Jesters, too, were a global phenomenon: in the One Thousand and One Nights, for example, the king cannot go an hour without the companionship of his hunchbacked jester.
But not even nobles were spared scrutiny for their physical deformities. “The time will come when thou shalt wish for me,” Queen Margaret warned Queen Elizabeth in Shakespeare’s Richard III, “To help thee curse that poisonous hunchback’d toad.” The toad is the titular Richard III, an otherwise healthy monarch, and accomplished fighter, whose hunched back is invariably invoked in allegations of sinister conduct. His scoliosis was worse than mine: it may have exceeded seventy degrees. Later Elizabeth dutifully exclaims, “O, thou didst prophesy the time would come / That I should wish for thee to help me curse / That bottled spider, that foul hunch-back’d toad!”
The scoliosis progressed, and I mutinied. At fifteen I had surgery, a spinal fusion, to correct the scoliosis. The orthopedic surgeon reconstructed my spine: he stripped muscles and ligaments away from the spinal column, then decorticated thirteen vertebrae, chipping away excess bone from my spine and hip to use for a graft. With screws, hooks, and two long steel rods, the surgeon winched my spine nearly straight: the curvature went from fifty-six degrees to just sixteen degrees, from an obviously asymmetrical torso to having no discernible signs of deformity. The surgeon sheathed my newly straightened spine in bone chips that, once fused, would become stronger than the steel beneath.
After a week and the completion of a postoperative obstacle course—bending, sitting at a forty-five degree angle, standing, then walking—I left the hospital. The first cogent memory I have of life after that surgery was two weeks afterward, on September 11, three weeks into my six-week bed rest sentence. I was groggy that morning after a month of isolation, medication, and I was slow to wake. When my sister tried to tell me what was happening in New York, I resisted, because what she was saying didn’t make sense. She insisted that terrorists had attacked the World Trade Center, and made me come to the television. I watched as the pair of tall, straight buildings, not unlike the rods now holding my spine together, were assaulted, burned, then fell.
In Victor Hugo’s Hunchback of Notre Dame, the archdeacon of Notre Dame finds an infant “very deformed indeed” in a bag on the steps of the cathedral: “The poor little imp had a great lump covering his left eye, the head compressed between the shoulders, the spine crooked, the breastbone prominent, and the legs bowed.” The twist in his spine is mirrored everywhere from the spires of cathedrals to a rope noose.
Robert Louis Stevenson wrote The Strange Case of Dr. Jekyll and Mr. Hyde in 1886. Attempting to describe the hulking, asymmetric Hyde, one character can only sputter, “he must be deformed somewhere; he gives a strong feeling of deformity.” Common observers agreed Hyde seemed afflicted by some “unexpressed deformity.” “Evil,” Stevenson’s narrator muses, “had left on that body the imprint of deformity.” Stevenson’s purposefully vague language hints at the difficult-to-pinpoint but profound disorder wreaked by skeletal deformity.
When I returned to school after my surgery, I still had adhesive strips pulling together the halved flesh of my back. I felt that pull with every motion. I tested my temperature a half dozen times a day to monitor against infection. Teachers were annoyed by my limitations and classmates were callous. I felt even more alienated than I had when my deformity was visible.
I do not think that would happen today; at least, I hope not. Now, blogs and Web sites detail narratives and showcase photos, scans, and X-rays, while YouTube hosts graphic video of animations (for medical malpractice cases) and the surgeries themselves (for students, doctors, and ghouls). I run across articles every week exoticizing spinal-fusion surgeries and lauding the patients who undergo them, stories portraying science triumphing over nature, a miraculous cure. Now there are genetic tests to predict the likelihood of developing scoliosis and even iPhone applications to measure its severity.
Scoliosis seems only to have been destigmatized by the advent of effective treatment. The spinal fusion first appears in medical literature in 1891, when a Dr. B. E. Hadra writes about a procedure in which he wired fractured vertebrae together in hopes of “fixat[ing] the spine until a solid bone fusion develops.”
Doctors began deploying spinal fusion as a treatment for spinal deformity incidental to severe tuberculosis. While severe scoliosis is rare, tuberculosis was anything but uncommon in the early 1900s. In 1900, tuberculosis was the second leading cause of death in the United States. Once used to treat fractures and disc degeneration caused by tuberculosis, the broader applications of spinal fusion became apparent: it reduced low back pain and allowed surgeons to realign the spine.
Spinal surgery evolved rapidly throughout the twentieth century. The 1930s brought stainless steel wire; in the 1950s, an orthopedist began fixing the spine in place using steel rods, still called Harrington rods in his honor. I have Harrington rods, just as my paternal grandmother did.
Best I can tell, treatability caused the sea change: when scoliosis became treatable, it ceased to be so shameful. There was a way for hunchbacks and crooked spines to cross the Styx, back into the world of the healthy and whole. And with that new way came new narratives for the deformed. Some of my greatest comforts as a teenage twisted spine were the contemporary stories that depicted my affliction.
Twenty years after Dr. Harrington developed what would become the mainstream method of treating scoliosis surgically, Judy Blume wrote a book about a teenaged girl struggling with self, body image, and medicine after a scoliosis diagnosis: Deenie. The protagonist wears a brace that becomes the embodiment of adolescent anxieties, fears of romantic rejection, and unpopularity. I would have memorized the book by now had I read it every time someone told me I should.
Blume’s book affirmed my anxieties, for which I was grateful, but did little to illuminate the medical decision-making I faced. At fifteen, I didn’t know how little I knew: I couldn’t conceive of the pain of surgery and difficulty of recovery or steel myself for the humiliation and infantilization that accompanied spinal surgery. I was in the hospital for a week, moving only when moved, catheterized; on bed rest with independence, but in isolation for weeks more.
Now, I reflect on my surgery with gratitude, and, strangely, a touch of guilt. For me, the two years of unknowing between diagnosis and surgery were filled with uncertainty and solitude. Others supported me and I had a terrific, patient surgeon, but it was my back, my life. I felt so isolated at various points, so alone that not even literature helped. I wish I had done more then to make things easier for those coming after me, though writing about the disease and speaking about my surgery is all I can do, adding another voice to the choir of twisted sisters.
Rebecca Buckwalter-Poza is a writer and former political consultant. She has worked on political campaigns and projects on five continents in addition to coauthoring 40 More Years with James Carville. She has written for The Atlantic, CNN, The Daily Beast, Pacific Standard, and The Nation. Find her work and interviews online at www.buckwalterpoza.com; follow her on Twitter at @rpbp.