Sitting Pretty

by Rebekah Taussig

  Now, in all of my retrospective wisdom, I can dissect my poor attendance to its tiniest particles. Some of my sick days were tied up with the unique pains of my body. At least once a month, my back and side would surge with raging nerve pain that flared every time I spoke or took a deep breath, let alone moved my whole body. Some of it was surely wrapped up in anxiety and depression. I felt like a glaring typo on the text of my high school, a clear outsider, the thing that did not belong. I’m certain there were others who felt this way, too; I just didn’t know how to see them yet. And of course, navigating through a world that doesn’t operate with your disabled body in mind is simply exhausting. I didn’t understand the web of factors pushing me back into bed day after day. Instead, I just felt like a giant, incompetent failure.

  As I got older, I couldn’t fathom how I would grow up to work a Full-Time Adult Job. How would a girl who could barely get through a week of high school even approximate Tim Taussig’s Working Adult Schedule? The contrast between our days was stark and embarrassing. But there were other, logistical barriers that made it difficult to picture, too. Like every year on “Take Your Daughter to Work Day,” I tried to ride the public bus with my dad, and every year, my disabled body seemed to single-handedly shut down the entire transportation system. The bus drivers never knew how to work the lifts or attach the extra strap to lock my wheels to the bus floor. As the years went by, my peers were getting jobs as waitresses and baristas, landscapers and grocery-store cashiers, but I couldn’t picture myself fitting into any of these jobs. How could I deliver plates of food to tables? Or operate espresso machines that rested on countertops I couldn’t reach? And if I couldn’t get a job, could I even be an adult?

  Even at a very young age, I found it difficult to picture myself in the future. I couldn’t imagine life beyond being my parents’ child with any clarity or practicality. When I was eight or nine, I started somberly reporting to my parents that I would not live past the age of fourteen. What a cruel and creepy thing for a kid to say to her parents, right? (Sorry M & D!) But I didn’t mean it to be ominous. Honestly, I think it came from an earnest inability to see into my adulthood—my future was a blinding-white blank slate. How would I ever navigate the hoops laid out before me? How would I pay the steep bill attached to living in this body of mine?

  Two summers before I graduated from high school, my longtime best friend Bertie and I volunteered with our church to work at a summer camp located a few hours outside of the city. Like most camps, it wasn’t accessible. This didn’t surprise or even upset me. It was totally what I expected, what I always expected, from the built spaces around me. Plus, Bertie and I were experts at maneuvering the inaccessible. We’d been friends since the early, awkward days of seventh-grade band, sitting side by side playing flute, catching each other’s eyes and giggling whenever our ragey director threw another fit. She knew how to tilt my chair to the side whenever I needed to pop my wheel back into place, didn’t hesitate to bump me down a flight of stairs whenever they appeared in our path, and didn’t get frazzled by a big grassy hill. We always found our own weird way, and I remained relentlessly optimistic that we could make anything work. I applied for the camp counselor position with the caveat that Bertie would do it with me. Together, we would plow through it all, like we did through craft fairs and theme parks and high school hallways.

  Within a few weeks, the camp declined my application. Administrators explained in a few words: I wouldn’t be able to fulfill the duties of a counselor, or even an assistant counselor, on their grassy, hilly, covered-in-stairs campgrounds. I was devastated and pretended I didn’t care at all. I was totally chill, easy breezy, whatever, babe. Bertie suggested we reapply for positions in the kitchen, and after a bit, the camp came back with a different answer. Bertie and I could be assistant cooks in the smallest camp kitchen. After the sting of the initial rejection subsided, we were both thrilled.

  We were just as efficient at washing dishes as any typical high school camp staffer. (So, not tremendously efficient.) We invented games to make washing hundreds of dishes into a good time and listened to Relient K and Audio Adrenaline as we plopped canned fruit onto serving dishes. In the afternoons we ran around with the kids on the rickety playground equipment and played cards in our little cabin. Bliss.

  One afternoon, as Bertie pushed me back to our cabin for an hour of playing Hearts and chomping on Pringles, she whispered behind my ear, “I saw something I wasn’t supposed to.” I begged her to tell me what it was, but she wouldn’t until the door was closed tightly behind us.

  “Have you noticed that we have like a hundred percent more free time than anyone else working here?”

  My mind filed through memories of the past few days: we were in the kitchen a few hours a day, and the rest of the time, we wandered around the camp, took naps, and painted each other’s nails.

  “Yep.” I laughed.

  “Well. I saw a sheet of paper that listed the positions of every single staffer at camp,” she said. Her eyes were wide, but I couldn’t tell whether she was amused or angry. Maybe both. “And next to each person’s name there was a little ‘1,’ like the position was filled with one person. Next to our names?—they put zeros.”

  In other words and as we reasoned, the camp seemed to have invented these positions for us in order to give us something to do—to make us feel included. (And by “us,” I mean me. Of course Bertie could have had a real staff position if she weren’t busy helping me over the bumpy campgrounds and up the steps of our cabin.)

  Bertie kept talking, and I think I even giggled, but inside? All I could hear was this: the work you’re doing at this camp—your presence here—is comprehensively, quantifiably, undeniably worthless. Not only was I a zero, but I’d made Bertie a zero as well. I was a burden, taking up so much of Bertie’s energies that I robbed her of any worthwhile contributions she could have made.

  “Well, at least we know we never have to come back!” I said, trying to stay light and bright. I’d really believed I was contributing something to the camp, holding out my open hands with something of value to offer. But somehow, this contribution didn’t fit into the camp’s system of tasks and work. Every hour I’d spent spraying down the dirty plates, singing loudly over the dishwasher, opening cans of peaches, giggling with the kids on the playground—every moment that had meant something to me, every memory that was still plump and soft with that sweet camp glow, felt sucked of meaning, like a jelly doughnut scraped into a hollow, bland pastry carcass. My efforts didn’t count. Literally. The dismissal made me pull back and clench my hands into tight fists.

  As I neared my graduation from high school, I hovered on the edge of what felt like an endless canyon. I couldn’t picture how I would survive this endless stretch of landscape, let alone where I fit into it. I knew there were paths that could get you safely from one side to the other—go to college, pick a major that will land you a job, pay your bills, save some money, and retire into the sunset—but no matter how chipper and positive I tried to be, I started to see more and more signs that my body would not glide easily through these mile markers. Each step and turn brought complications, each milestone came with costs. And one fee waiting for me in adulthood would arrive on my twenty-third birthday. As my dad reminded me with increasing urgency, I would be ejected from his health insurance coverage when I turned twenty-three. Happy birthday!

  I expect this rite of passage is distinctly American. In 2010, the cutoff was extended to one’s twenty-sixth birthday. Every once in a while, I find myself playing the impossible “what if?” game, imagining what choices I would have made, what dreams I would have chased, had I grown up in a country where the fear of not having health insurance didn’t haunt the background of the possibilities I allowed myself to imagine. Would I have taken more risks, followed my gut, dodged some bullets, breathed more easily if the constant fear of paying for my body were put to the side?

  I’d known of this looming twenty-third-birthday deadline si
nce I was a young girl. Year after year, my chest tightened just a little bit more. I knew I was expensive. For as long as I could remember, I’d been racking up medical bills for my parents with a never-ending string of treatments, visits to specialists, prescription medications, and regular testing. I was also very aware that we didn’t have money to spare—we drove our janky, sputtering cars to the ground, wore only hand-me-downs and second-hand clothes, “vacationed” at my grandmother’s three-bedroom ranch in Lawrence, Kansas, and splurged by sharing an extra-large pizza at Godfather’s on our birthdays. I saw my dad going out of his way to save seventeen cents on milk, even as I sat in a wheelchair that cost more than his car. The older I got, the more I cringed at the bills my body created. It took me a bit longer to realize just how lucky we were. The only reason my parents were able to pay for my body at all was because of the health insurance policy my dad received through his full-time job at the big bank downtown. Many people do not have this kind of coverage or stability.

  * * *

  Just after my twenty-second birthday, my anxieties about healthcare rise to an ear-splitting crescendo. The cutoff is nearing when I get off a return flight to Kansas City late on a Tuesday night. I’m driving my truck home from the airport, hyped up on travel adrenaline and airplane Dr Pepper, updating my longtime boyfriend Sam with every detail of my trip. (You know Sam—the kid who bought me a Magic Eye book when we were eight, the one I loved/hated like a brother, eventually married, and very quickly unmarried.) He sits in the passenger seat, giving just enough “mhmmms” to fuel me onward. I’m still chatting when I park my car in front of my parents’ house, swing my legs to the side of the car, and prepare to transfer into my wheelchair. I interrupt my own relentless narrating, confused. “I think my legs might be asleep.” I scowl down at my entirely lifeless legs, trying not to panic. I pinch them and shake them, but I don’t feel even a tingle of blood rushing back to them. My panic rises, and I start to pound my shins and thighs with my fists. “What’s going on?” I ask Sam, my voice painfully high and thin.

  “Just breathe,” he says, lifting me into my chair. “You probably just need to stretch out.” He pushes me and my wheelchair into my parents’ house, helps me into bed, and rubs my legs with his hands. My parents hover above me with Sam. No one says very much, but everyone stays close and watchful. Sam wipes panic tears off my cheeks, strokes my hair, and murmurs that he’s sure everything is fine. That’s when I realize I’m sitting in a puddle of my own urine without the smallest sensation that I’d needed to go. Without warning or precedent, I’ve lost every bit of sensation and function from my waist down.

  This news might not sound like an enormous deal if you don’t understand a little about how my body functioned before this moment. I mean, the doctors and nurses in the ER seem startlingly unconcerned when we arrive later that night, so here’s the quick sketch: From the days when I first started falling when I was three years old to this moment shortly after exiting the plane, I had spotty sensation from my waist down—more feeling in my right leg than my left, more feeling on my inner thighs than my outer. I could stretch my legs and stand for a bit. I could walk short distances by pressing one hand against a wall and holding on to someone’s shoulder with the other. I could walk slowly up and down stairs that had a railing. I could stand in the shower if there was something to hold on to. I could lean against the sink while I washed dishes. I could lift my wheelchair in and out of my car by pulling it over my body.

  In an instant, all of this is inexplicably gone, like a light switch turned off. I can’t feel the slightest pressure or twinge or tingle, even as I dig my fingernails into the skin on my legs. With all my effort and concentration, I can’t wiggle a toe, let alone stand. These changes in my body will require a fundamentally different way of interacting with the world—I won’t be able to transfer into my car the same way or use the bathroom or the kitchen in my house. I’ll need to find a new system for managing my bladder and bowel routines, for hanging out with friends. As soon as I think about sex, I start to cry.

  I’m not the first person to find herself in this position. Across the planet, people are making these kinds of adjustments every day, but I’d been under the naive impression that I’d already done all the adjusting the universe would ever ask of me. I’ve had no warning, not even a whiff of a hint, that these changes were on the horizon, and I’m reeling. Has my cancer come back? Did I get injured without realizing it? Is it only going to get worse?

  I spend the night in the ER where they run expensive tests requiring machines that look like they belong in a dystopian future. As they inject dye into my spinal cord and take pictures, I’m comforted in my belief that somebody, somewhere will be able to tell me what’s wrong. In the earliest hours of the morning, they transfer me to the inpatient floor. Lying in my starched, white bed under the searing, fluorescent lights, I meet with neurosurgeons, neurologists, and physical therapists. No one can tell me what happened or why. (And no one has since. It’s an incomplete puzzle that I still struggle to put away.)

  Without any medical explanation, my sensation starts to return. I wiggle one big toe, then clench a muscle in my right thigh. One afternoon with a room full of visitors, I shout, “I have to pee!” like I just discovered a lifetime supply of chocolate under my hospital bed. Soon after, I’m transferred to a rehab hospital where I live for a week, followed by months of outpatient therapy until my body nearly resembles the body I’d known before. Day after day, my brain tallies the bills. Each time they draw my blood, every doctor who sits with us for three minutes of “consulting,” every stool softener nurses bring me in a tiny plastic cup becomes an item on the mile-long-printout bill. If my dad hadn’t already met his insurance deductible and out-of-pocket max that year, we knocked it out of the park in the first month. I feel the numbers like a grainy pit in my stomach, but the sour that won’t leave my mouth is the cold hard calendar facts: I am unspeakably grateful for my dad’s insurance, but I’m turning twenty-three in ten months. What if this had happened a day after I had turned twenty-three? Could I have even paid for the first trip to the ER? What am I going to do?

  This is a very personal story, but it’s part of a much bigger story, too. So many human beings live under the threatening shadow of health insurance—so many of us have shitty insurance, or pay astronomical prices to have insurance (even when it’s shitty), or live in fear of losing our insurance (yes, even the shitty kind). More of us than we’d like to believe live one emergency room visit away from bankruptcy or avoid getting that lump checked because it’s probably nothing and who can afford to pay just to be safe? There are those who will be paying off medical bills into old age from the motorcycle accident they had in their early twenties or the open-heart surgery performed on their newborn baby. In case you can’t quite tell where I stand on this issue: this is some bullshit. The single most universal trait we all share is having a body, and all of us, no matter what, are susceptible to the frailties of that body. All bodies age, weaken under the power of germs, viruses, diseases, pain, and injury, require intervention and maintenance, rebel and go rogue. All of our bodies are at risk (some much more than others), and there could not be more at stake. This is inescapably true—and yet. Not all of our bodies have the same access to care, and let’s be clear: all of our bodies deserve care.

  After the initial shock that my body is actually a minefield of instability starts to recede, the days begin to feel more manageable. Sam goes on slow walks with me as I cling to my walker with wild-eyed determination. My sister brings her kids with stacks of homemade cards and little baggies of peach gummies. My mom is there every single day with a bag of books and a notepad where she can keep a record every time a person with a medical degree stops by and says anything. My dad visits in the evenings after work. It’s the nights when I’m left with the cold fear that, no matter what I try to do to prevent it or wish it away, any part of my body might stop working at any instant. (This is technically true for all of us,
despite the fact that we’ve collectively agreed to believe the opposite—that with a good diet and exercise, we will live healthily for eternity.) This realization feels just as shocking to me, a young paralyzed woman, as I’m sure it’s felt to others in their prime. It’s scary to look the facts in the face: my body is vulnerable, impermanent, and only wearing down.

  One of my first nights in the inpatient rehab hospital, I sit with my knees propped under my chin and stare at myself in the mirror above the sink, running the tips of my fingers over my shins to verify that I can still feel the edge of my nails. Only one light is on in the room, so my face is marked by sharp shadows. I peer at the girl in that reflection. What good does she have to offer? The purple circles under her eyes and her dull, sallow skin verify to me that I am not healthy or strong, but small and fragile. I decide that I don’t trust the girl in the mirror to take care of me. She will never be able to earn the money, pay the bills, afford healthcare for herself. What will she do the next time she is inevitably hospitalized at the age of twenty-four or thirty-two or forty and is no longer on her dad’s insurance?

  I feel my perception of my body fundamentally shifting. My form feels frail, permeable, unreliable—like parts of it might fall off or crumble to a powdery dust at any moment. Life feels too hard. I can’t do this. And right there, curled up in the hospital bed at the age of twenty-two, I decide to give up. I’m not going to try—to find a career or a place in this world, to fight for plans to move out on my own, to pay my own bills, to strive to build a life of my own. I will shred any budding plans I might have had for my life and sink deep into the role of invalid like a warm, lethal bubble bath.