Sitting Pretty

by Rebekah Taussig

  Some genuinely insightful comments were sprinkled throughout the Reddit thread. I was struck by the man who had the foresight to recognize that all of us age eventually, and we all become dependent if we live long enough. There was also the man who seemed undaunted by the possible limitations accompanying sex with a paralyzed person. Instead, he saw the unexplored parameter as an opportunity for play. He imagined himself coming up with creative positions, arriving home excited and ready to rearrange the pillows.

  These men were the exceptions. The overwhelming impression I had scrolling through the contributions was a tremendous lack of imagination, a reluctance to deviate from some kind of default path and try something different. It was as if they truly believed they knew what they were getting into with a partner they perceived as nondisabled. Somehow, a body that appeared more familiar meant that sex would always go as expected, they would never find themselves in the position of caregiver, their dates would be easy to plan, and they’d always share the same hobbies. They had a picture of love or romance or hooking up or partnership fixed in their minds. Anything outside of that image brought about anxiety, caution, questions. But where did that image even come from? And why are we so fervently wrapped up in it?

  * * *

  Before almost anything else—before I knew how to read, before I’d figured out how to make my own cup of hot chocolate from a packet of powder, before I had my first best friend—I knew two things: that being loved by a boy was essential, and that love was gained through beauty. Hiding out in our musty basement, I watched hours on hours of my grandmother’s taped episodes of As the World Turns and learned everything about the mechanics of romance. Sitting frozen on the threadbare burgundy velvet couch, my feet limp and knees scabby from crawling across the wood floors in our house and all over our neighborhood, I watched men crave women’s soft, glowing bodies. Women controlled men by tempting them with their easily ripped-open blouses. Whole plotlines twisted and turned on the kind of longing captured in clenched jaws and heavy breathing. I forgot to blink as their bodies spun and tangled with desire. I filed it all away, piecing together what I thought were the rules for everyone.

  I saw the same theme everywhere. Muscly men watching nearly nude women dive into the ocean, or women stopping traffic with their long, thin legs walking atop dangerously tall stiletto heels (advertisements for perfume or shaving cream or hamburgers, obviously). So many screens panning women’s bodies while boys and men gawked and swooned. In The Sandlot Squints is transformed by the sight of Wendy Peffercorn oiling up on her lifeguard stand, while Chandler and Joey on Friends plan their days around watching women in red swimsuits run across the beach on Baywatch. There were some variations on the theme, like when the boy beast falls in love with the human girl, or the human boy gawks at the fish girl singing on a rock with her voluptuous red hair flowing; but regardless, the beginning and end of the story revolved around the girl being wanted.

  It wasn’t all cheap plotlines and confusing advertisements though. Part of my conviction in the importance of being loved by a boy was surely reinforced by the powerful center of my universe—my parents. Their love for each other, particularly my dad’s devotion to my mom, felt steadier than the sun’s trek across the sky. Every evening at 6:17 he arrived home from his job at the bank in his black suit and tie and went straight to my mom. She’d be in the kitchen making dinner and wearing a real-life apron. She would pause whatever stirring she was doing, and he’d wrap her up in his arms for a good minute. He’d rub his cold ears on her cheek, and she’d scold him, and they’d both grin. I feel like I’m writing a really dull family sitcom right now, but this picture was the backdrop to my days—my suited dad holding my lanky, beautiful blond mother with a spatula in her hand.

  Boys infatuated with girls was the plotline of every game of make-believe I played: paper dolls, Barbies, doll house people, and, of course, “house.” Acting out scene after scene of tragic car accidents that ended with a doctor falling in love with his (always “his”) wounded patient, or a family of sisters who were orphaned, prompting the oldest sister and her boyfriend to become very young, unlikely parents who still managed to find time for steamy make-out scenes. When I finally did get my first best friend, instead of playing queens or cavewomen, we squabbled over who would play the “boy” part. Because what is play without the dramatic conflict of receiving male love and attention?

  From Disney and the wobbly VHS recordings of As the World Turns to my Barbies and the covers of magazines displayed by the grocery store check-out counter, I had an endless line of images running through my brain. The girls worthy of adoration had itty-bitty waists and dainty little feet, big round boobs below delicate spindle necks. They twirled lightly in a dress, and their mountain of hair bounced back and forth with the smallest turn of the head. Without anyone to tell me otherwise, I identified with this vision. “Yes,” I thought. “I choose that.”

  I believed it was that simple. I saw beauty, and I felt beautiful, so, of course, I surely looked just like the beauty I saw. When I arrived at the inaugural day of sign-language club as a first-grader, we were all asked to come up with our own signed name by choosing a word that described us. “Beautiful,” I said. No pause, no doubt, no wavering. I was so confident, I grabbed the whole word for myself. It belonged to me. When I pictured myself, I saw stunning, luminous royalty. I’d twirl my hair through my fingers and see piles of gold. I’d smile and imagine a coy, captivating princess curl on my lips. I’d choose my dress in the morning and could actually see myself in it, graceful and swirling in the wind.

  The shoe you are waiting to drop is on its way. Because, of course, I looked nothing like Ariel with her seashell bikini or even Wendy Peffercorn putting lotion on her legs. And while few of us look like a 1990s lifeguard hottie and none of us resembles a cartoon mermaid with eyes the size of fists and a waist the size of a wrist, my body was farther from this ideal than most. It took me longer than you might imagine to realize this. How hard is it to recognize that the clunky leg braces up to your thighs look nothing like the thin, sweeping legs stopping traffic in a lip gloss ad?

  I lost my belief in my own beauty in starts and stops, wave after wave of recognition—“Oh, wait! I don’t look like that!” And the thought hovering close behind, “I’m not beautiful!” It wasn’t lost with one misstep and a quick slip from my hand; it was pulled slowly from my clenched fists over the course of years.

  When I was fourteen, I went to Lake Michigan with a group of friends. Someone put my hair into two messy buns on top of my head, and I wore a classic black one-piece. Friends took turns giving me piggyback rides to the water; I don’t even remember my wheelchair being there. Did we leave it in the car? I spent a lot of the day on a beach towel, rubbing sand between my hands, feeling the sun sink into my shoulders. I felt like Christy Turlington in a Calvin Klein cologne commercial—everything was black and white, organic, flawless, slow motion, while Aimee Mann sang softly in the background, “What the world needs now is love sweet love.” About a month later, I saw video footage someone had recorded of the afternoon. Watching the clip took my breath away—a stab in the gut—I was horrified. What I saw was so far from Christy Turlington in black and white; my torso was thick and twisted, my shoulders were broad in contrast to my limp and flabby legs, my feet looked like I was wearing heavy gray booties. I could barely stand to keep my eyes on the footage. It was gruesome to me.

  Again and again, I felt jarred when the image captured in the frame didn’t look anything like those visions of beauty I’d gathered within me—thin, delicate, dainty, unscarred, unmarred, unbound. My actual appearance matched much sadder images I’d seen—I looked more like something medical, tragic, painful, broken. That wasn’t who I wanted to be, or even who I felt myself to be. I started to crop my lower half out of every image. If I never saw it, I could pretend it didn’t exist.

  Even when shame wasn’t the loudest voice in my head, there was this practical piece to passion and desire
that I couldn’t work through. As early as fifth grade, I’d sit on my bed and try to work it out in my diary. How would it go? What would it look like for a guy to ravish me? To want me? In As the World Turns guys pushed women up against walls or slowly, gently lowered them onto beds and couches and mossy forest floors. Part of it was the mechanics of the thing—would he have to help me undress? Would he have to lift me out of my chair? (Neither option sounds bad now, but at the time, such prospects mortified me.) But it wasn’t just the sex. I couldn’t even picture a romance between a paralyzed person and a standing partner. How would these two hug? Walk down the street together? Dance? Pose for photos? I had never seen it. I found myself with a lack of imagination on a par with our Favorite Men of Reddit. If we’ve never seen it, is it even possible?

  No one ever said the words, but I pieced them together on my own, slowly, methodically, and over time: “You are too grotesque to be wanted. You don’t belong in a love story.” I carried this lump in my belly, and it pumped toxins to my limbs and up my spine on the daily.

  When I did allow myself to fantasize, I did so by playing one enormous trick on my brain: in my fantasies, I was always a nondisabled version of myself. My body was symmetrical, with working legs. My feet were dainty and pink. My waist was so very thin, and I moved through every space with grace and ease.

  * * *

  Sam Wagner was my one chance—at a love story, at being loved, at living the life of a wife. He was the youngest boy in a family of seven kids all born within the span of eight years. We went to church with the Wagners, and when Sam and I were eight years old, he spent all of his allowance money to buy me a $3.95 Magic Eye book I’d picked out of my school’s Scholastic catalogue. His generous gift set off a tiny spark that maybe, if I wished it into the universe with all of my whole earnest heart, Sam would love me enough to marry me one day.

  For years, I saw Sam once a week at Sunday school. I’d wear my prettiest Sunday dresses, have my mom curl my hair with hot curlers that singed my forehead and the edges of my ears, and sit silently through church trying to see whether Sam noticed how pretty I looked. Maybe he’d glance over in my direction when the boys teased the girls during Bible Trivia, but most weeks he seemed to have forgotten the flash of special closeness we’d felt when we were just a bit smaller. The rest of the week, I pined. I started praying each night on a bright star, then wishing every night at 11:11 for this unfathomable dream to come true. (When willing a miracle into the world, it’s important to cover all your bases.) In the meantime, I started telling everyone who cared to listen (and some who didn’t) that I didn’t want to get married when I grew up. I proclaimed the business to be a distasteful one. Because, if you decide to become an Old Maid, it’s one hundred times less pathetic than if you’re forced into Old Maidenhood against your will.

  I still don’t know what did the trick—probably the hot curlers—but slowly, slowly, as the years stretched out and we turned into adolescents, Sam really did start to pay attention to me. He’d sit near me on the bus during youth group trips, and we’d sing along loudly to Relient K. He’d ask me and a handful of other church kids over to his house “to sing praise and worship songs,” then ask to braid my hair as we sat around the fire pit in his backyard. I believed myself so rigidly stuck in my disabled role outside of love stories that it was very difficult for me to believe Sam saw me as anything other than his nonthreatening gal pal. I didn’t truly believe he felt anything special toward me until one 2 a.m. phone call, me sitting on the kitchen floor and Sam hiding in his basement, when he said the words, “I’m really into you.”

  “Really?” I said. I could hardly wrap my head around it. This was some kind of wire-crossing, slipping-through-the-cracks fluke, and I treasured the miracle.

  I knew people watched us and didn’t quite know what to think. There were no couples that looked like us in any mainstream spaces. Except maybe Christopher and Dana Reeve, but they’d been married before the accident that brought tragedy to their marriage. Their relationship wasn’t a model of sexy chemistry or appealing intimacy; it was the image of the desperate quest for a cure to right an obvious wrong. If Sam and I were to have our romance depicted on-screen, we would be in a comedy where everyone laughed at the cringy “handicapped” girl who thought she had a real chance at love (think Joan Cusack in Sixteen Candles trapped in headgear trying to drink out of a water fountain or talk to a boy on the bus) or in a painful, tear-jerking flick about the selfless hero who’s able to look beyond the grotesque deformities and love the broken girl, despite (think A Walk to Remember, but replace the exquisite dying Mandy Moore with the image of a freakish version of Joan Cusack trapped in headgear, etc.).

  When people saw Sam and me together, they placed us in one of two stories—the embarrassing comedy spectacle or the breathtaking picture of the truest love on the planet. This stood in stark contrast to the real story about two teenagers who liked each other.

  In my experience of love, high school boys might be tied for first with our Favorite Men of Reddit in their reluctance to imagine. I felt the discomfort from Sam’s school friends. They were more likely to place our romance into some kind of absurd comedy worth cheap, thoughtless laughs. I still remember hearing about the guy in his class who teased Sam, saying, “At least my girlfriend can run.” I read the words now, and they have the sting of one sad, crumpled red cup—it’s empty and weak. Yay for you! A girlfriend who runs! Sounds like a great time. You must be so happy together, what with the running she does. Even Sam didn’t seem too bothered by the joke at the time. But I remember turning the sentence over and over in my head—at least my girlfriend can run. Because, of course, it tapped into so much more than just running. Girls who run are the girls worth catching. They use their running skills to twirl and walk down runways and have all the fun in bed. Girls who can’t run might as well be old ladies living in nursing homes that smell stale and sad.

  The “breathtaking romance” was a more common narrative attached to us, and it was not an appealing alternative. I became accustomed to older women at our church stooping down to my ear, uncomfortably close to my face, and fervently whispering that I was so lucky to be loved by such a man. Can you believe how much that young man loves her? they’d ask each other. Amazing.

  I could never forget how lucky I was to be loved by Sam. Which made the experience of dating him very confusing. Because, it turns out, I didn’t actually like him the way I thought I did. I mean, yes, I liked him. Especially at first. But very quickly my crush turned into a begrudging affection, like the way you care for a little brother who grates on your every nerve, but he’s been through a lot of life with you and also, he’s pretty cute when he falls asleep on a road trip, so you can’t just throw him out on big trash day. At the same time, you probably wouldn’t choose your obnoxious little brother, or even his equivalent, to partner with for life. I’d known Sam since we were eight years old. I loved the way he romped through the snow like a puppy and loved me with the same thoughtless loyalty. A love I was sure I didn’t deserve. But the way he couldn’t stop jiggling his leg or whistling through his teeth drove me up the wall. And more than the tics and the noise, there was something else. I didn’t know what it was—I’d never been with any other person, so it was difficult to put my finger on—but it felt something like being invisible. I could say or do anything—shout, throw a fit, jump on the roof, burn down the house—and Sam would look at me in the same exact way. Did he see me at all?

  We talked about breaking up about once a month. I’d reach a breaking point—Why am I with this person? I don’t even LIKE him! Sam would always talk me down—Love is sacrifice! If this were easy, something would be wrong. We talked about it over and over again, but in the end, the conversations started to feel more like gestures. Childish fits. The idea of breaking up with Sam never really felt possible, because I knew what it meant. If I ended things with this harmless man-child, I would be alone for the rest of my life. I would never have a family of
my own. Never feel loved again. Never feel wanted. And choosing to give all that up felt foolish. I could put up with almost anything to avoid being alone and unwanted.

  I remember the moment when I realized I’d never actually break up with him. I looked at my face in the mirror—this face with a long nose, tiny lips, and tired eyes—and told myself to be honest. Realistic. This was it. I couldn’t imagine any other path for the girl in the wheelchair.

  At the wise age of twenty-two, we decided to get married.

  * * *

  I was a bridesmaid four times before I was a bride. With each wedding my disabled bridesmaid body required rearrangements and cringy adaptations, especially in the perfectly posed group wedding photos. Now, all of the bridesmaids stand on a different stair and circle the bride. And what should we do with the one who doesn’t stand . . . hmm . . . have her sit on the floor? Yes, good thinking. The older I got, the more I felt like the aesthetic failure of other people’s weddings—the object that did not belong, the weird outsider who threw off their pictures, the person whose body would not cooperate with the most accommodating of dresses. Weddings were supposed to be pretty enough for the cover of a magazine, and it seemed like the disabled bridesmaid threw the whole wedding off course.

  When it was time for me to be a bride, I was adamant that I walk down the aisle. In the months approaching my wedding with Sam, I started practicing with a physical therapist. She’d call over an extra hand to carry a full-length mirror in front of me so I could watch myself as I took steps with a walker, paying attention to the sight of my hips (one fell lower, while the other did the work of two), my feet (one always dragging behind), even my arms (with veins that bulged like a bodybuilder under the strain, which mortified me). I looked awkward, clunky, rough, haggard. Nothing like the dainty floating brides I had in my head. I gripped the handlebars of my walker, tried to remember to breathe, and put all of my brain power into lifting that right foot, lifting that left hip. Too soon, my forehead would dampen, my wrists would start to tremble under the effort.